we now have over 25 pages of benefits and grants you may be able to get the slides below are just a few so Please click on the link below to see the full amount

Special needs conditions and disorders

This is a (very) Rough Guide to different special needs conditions and disorders - it's not exhaustive, so please tell us if we've missed any that you think should be included. We've added links to some of the main support groups for each condition for you to seek out further support and information

Genetic and chromosomal | Social communication | Developmental | Neurocutaneous |Neurological | Muscular | Special educational needs

Before reading anything on the internet about your child's condition, take heed of one experienced mum's warning: "Internet information that is too glib or general can make a terrible time in your life even worse."

Within most conditions are enormous spectrums and overlaps with other conditions, so assume that each of the following conditions includes the phrase: "Not necessarily as bad as it sounds on Wikipedia." And as with everything pertaining to health and wellbeing, take Doctor Google with a large pinch of salt (swiftly followed by tequila).
 

Genetic and chromosomal conditions

Genetic disorders 
These occur where there is a problem with an individual's DNA.

Single gene disorders 
This is where a problem occurs in a single gene. Cystic fibrosis is an example of a single gene disorder.

Chromosomal disorders 
This is caused by fewer, additional, or altered sets of chromosomes. Down's syndrome is a chromosomal disorder.

Multifactorial disorders 
These are caused by mutations in multiple genes, which may interact with environmental factors. Multifactorial disorders tend to occur later in life, such as colon cancer and Alzheimer's disease.

·                                 Unique - support for chromosomal disorders

Down's syndrome 
Down's syndrome (also known as Down syndrome and Trisomy 21) is a genetic condition caused by the presence of an extra chromosome in a person's DNA. It's not hereditary, or a disease, but instead occurs by chance at conception. There are around 60,000 people with Down's syndrome in the UK.

·                                 Down's Syndrome Association

Angelman syndrome 
This is a chromosomal (neuro-genetic) disorder caused by the absence of a gene. People with Angelman syndrome will have developmental delay, little or no speech, seizures, and walking and balance disorders.

·                                 ASSERT UK

Sotos syndrome 
This is a genetic disorder characterised by excessive physical growth during the first few years of a child's life. Children with Sotos syndrome are usually large at birth and often heavier, taller and have larger heads than is normal for their age.

·                                 Child Growth Foundation

Cystic fibrosis 
CF is an inherited disease. Around one in 25 people in the UK carries the faulty gene that causes CF, and if two carriers have a child, there is a one in four chance their baby will have CF. It affects the internal organs (especially the lungs and digestive system) by clogging them with thick, sticky mucus, which makes it hard to breathe and digest food.

·                                 Cystic Fibrosis Trust

Fragile X 
Fragile X (also known as Martin-Bell syndrome) is the most common known cause of inherited learning disabilities. It is caused by a 'fragile' or broken site on the X chromosome and affects more males than females. It can cause a wide range of difficulties with learning, as well as social, language, emotional and behavioural problems.

·                                 Fragile X Society

Social communication disorders and conditions

Autism 
This is a lifelong developmental disability that affects the way a person communicates and relates to other people. It's also known as austistic spectrum disorder, or ASD. People with autism have difficulties with everyday social interaction. Autism is often described as a 'spectrum disorder' because the condition affects people in many different ways and to varying degrees.

·                                 National Autistic Society

Asperger syndrome 
This is a form of autism. People with Asperger syndrome may have difficulties in social relationships and  communicating, and limitations in social imagination and creative play. Asperger syndrome has many similarities with high-functioning autism (in fact, some argue that there is no need for the two terms).

·                                 NAS: Asperger's syndrome

Deficit in Attention Motor control and Perception (DAMP) 
DAMP describes having some or all ADHD characteristics, as well as having motor difficulties and problems interpreting what you see and what you hear.

·                                 Mindroom

Attention deficit hyperactivity disorder 
ADHD (sometimes called hyperkinetic disorder) and attention deficit disorder (ADD) refer to a range of behavioural disorders or problem behaviours associated with poor attention span. These may include restlessness and hyperactivity, and often prevent children from socialising and learning.

·                                 National Attention Deficit Disorder Information and Support Service

Selective mutism 
This is an anxiety disorder that affects both children and adults. People with selective mutism find it hard or impossible to speak in certain situations or to certain people, although they can speak normally when they are comfortable, for example, at home. Around eight in 1,000 people are thought to be affected.

·                                 Selective Mutism Information & Research Association 
 

General developmental disorders

Global developmental delay 
If a child has delayed achievement of one or more developmental milestones (eg motor skills, speech and language skills, social skills) this is called developmental delay. Global developmental delay is the term used when a child has delays in all areas of development. There may be an underlying cause that is already known or can be diagnosed (such as a chromosomal or genetic disorder) or the underlying cause may be unknown. One mum says: "GDD is a phrase that's so often given to parents, but really it means nothing and everything."

·                                 Contact a Family: Information about GDD 
 

Neurocutaneous disorders

Hypomelanosis of Ito 
An extremely rare syndrome affecting pigmentation of the skin (also known as Incontinentia pigmenti achromians or IPA). It may be associated with seizures and developmental delay. Related conditions include pigmentary mosaicism and Ito syndrome.

·                                 Yahoo HITS UK Family Support Network 
 

Neurological disorders

Sensory processing disorder 
SPD, also known as sensory integration dysfunction, is a complex disorder of the brain which means that sensory signals from the body are not processed by the brain in the usual way. A person with SPD may find it difficult to process and act on information received through their senses, and so struggle to perform everyday tasks. It is thought about one in 20 people is affected by SPD.

·                                 Sensory Processing Disorder Foundation

Dyspraxia 
Also called developmental coordination disorders, or DCD. Children with dyspraxia have difficulties with motor coordination (tasks such as crawling, walking, jumping and fine coordination) when compared to children of the same age. People with dyspraxia may also experience problems with delayed speech or other speech problems. Dyspraxia is a life-long condition, but people are often undiagnosed and characterised instead as 'clumsy' or 'arkward'.

·                                 Dyspraxia Foundation

Verbal dyspraxia 
Verbal dyspraxia may occur alone or with other dyspraxic symptoms. It's thought that children with verbal dyspraxia have a problem with making the precise movements needed to coordinate speech.

·                                 Dyspraxia Foundation: problems with speech and language

Epilepsy 
This causes a tendency to have recurrent seizures (or fits). A seizure is caused by a sudden burst of excess electrical activity in the brain, which causes a temporary disruption in the messages passing between brain cells, which in turn results in the brain's normal messages being scrambled.

·                                 Epilepsy Action

Semantic pragmatic disorder 
SPD is a term used to describe children with possible autistic spectrum tendencies and communication problems caused by specific language difficulties, for example talking in memorised phrases rather than putting words together freely.

·                                 National Autistic Society: semantic pragmatic impairments

Tourette's syndrome
Tourette's syndrome (sometimes known as multiple tic disorder or tic spectrum disorder) is an inherited neurological (brain) condition that results in involuntary and uncontrollable sounds and movements.

·                                 Tourette's Action

Auditory Processing Disorder 
People with APD have difficulties processing auditory (verbal) information. APD is not a hearing problem, but an inability to process what is heard.

·                                 APD UK

Congenital bilateral perisylvian syndrome 
CBPS describes a malformation in the structure of the brain. There is a very wide spectrum in how this affects people, varying from severe brain impairments and epilepsy to very mild cognitive impairments. Lissencephaly is an umbrella term for brain disorders of the type including CBPS.

·                                 Lissencephaly Support Group 
 

Mylagic encephalomyelitis (ME) 
Mylagic encephalomyelitis, also known as ME, is a neurological disorder characterised by 

debilitating physical and mental exhaustion following normal, everyday activities. The symptoms of ME can include muscle and joint pain, disordered sleep, gastric disturbances and poor memory and concentration. The majority of people affected experience a fluctuating pattern of recovery and relapse. It affects up to 150,000 people in the UK.

·                                 ME Association
 

Mobility and muscular disorders

Cerebral palsy 
CP includes a variety of conditions, and is not an illness or disease itself. Instead, it is the description of a physical impairment that affects movement. No two people with CP are the same, and the degree to which it affects people varies from barely noticeable to extremely severe. CP is most commonly the result of failure of a part of the brain to develop properly or damage to the brain, either before or during birth, or in early childhood. There are three main types of CP (which correspond to injuries to different parts of the brain):

·                       Spastic CP: muscles become weak and stiff, especially under effort, which can affect movements.

·                       Athetoid CP: causes some loss of control of posture, which may also affect other movements.

·                       Ataxic CP: causes problems with balance, and sometimes irregular speech and shaky hand movements.

·                                 Scope

·                                 Cerebra

Muscular Dystrophy 
The terms 'muscle disease', 'muscular dystrophy', 'neuromuscular conditions' and 'neuromuscular disorders' all describe a large spectrum of conditions affecting the muscles or the nerves which control the muscles.

·                                 Musculular Dystrophy

Hypermobility 
Hypermobility describes the joint laxity that results from connective tissue problems, which causes joints, muscles, tendons and ligaments to be laxer and more fragile than is the case for most people. With this comes vulnerability to the effects of injury.

·                                 Hypermobility Syndrome Association 
 

Special educational needs

First, a note explaining what special educational needs are and why they're different from special needs.

'Special educational needs' (SEN) is a phrase oft-used in schools and nurseries, and comes attached with its own SENCO (special educational needs coordinator) and other jargon.

But you can have special educational needs without coming under the special needs umbrella – for example, a child with dyslexia would be considered to have SEN but would not really be considered a child with special needs. However, children with special needs would have special educational needs. Still confused? If so, don't ask us to explain Gifted & Talented…

Dyslexia 
This is a learning difficulty that makes it extremely difficult to read, write, and spell. Dyslexia is not linked to intelligence or lack of intelligence.

·                                 British Dyslexia Association

Dysgraphia 
This is a problem with writing by hand. Children and adults with dysgraphia have messy or illegible handwriting and may write with a mix of upper and lower case letters.

Children's Disability Lists of Lists

The Children's Disability List of Lists provides an annotated list of Support Groups for families of children with disabilities and special needs. Each disability mailing and support group list is validated for usefulness and family orientation.

ADD/ADHD Support Groups

ADD ADHD Parents
Mailing list that addresses Attention Deficit or Attention Deficit/Hyperactive Disorder in children, teens & adults, along with other Disorders (OCD, ODD, CAPD, Downs). Through sharing of experiences we can learn from each other to help our children to become productive adults.
To Join: Send a blank email to ADD-ADHD-Parents-subscribe@yahoogroups.com or join online.
Listowner: Cindy Shook

ODD Parents Room
Open group for parents of kids with Oppositinal Defiant Disorder (ODD), Conduct Disorder (CD), Attention Deficit Disorder (ADD/ADHD) and various other behavior and mental disorders. A place for parents to relax! 
To Join: Send a blank email to oddparentsroom-subscribe@yahoogroups.com or join online.

ADHD Children
This group is for Parents who want to talk about their childs ADHD problems. 
To Join: Send a blank email to ADHD_Children-subscribe@yahoogroups.com or join online.

Children with ADHD
Attention Deficit Hyperactive Disorder in children is frustrating and exhausting to the child and the family. Schools find these kids generally a burden, and often lack the understanding, skills and training to effectively deal with and help kids with ADHD succeed. We need to support one another through discussion of what works, what doesn't, medications, and all those issues that surface when loving a child who has the disease of ADHD. . . and it is a disease.
To Join: Send a blank email to Children-with-ADHD-subscribe@yahoogroups.com or join online.

ADHD Parents Support Group
A large parent support group for parents whose children who have ADHD. Open forum.
To Join: Send a blank email to adhdparentssupportgroup@yahoogroups.com or join online.

NIDS (Neuro Immune Dysfunction Syndromes
From Dr. Michael Goldberg, this information and support forum is for families affected by Neuro Immune Dysfunction Syndromes. Our focus includes: Autism / ASD, Asperger's / AS, PDD, ADD/ADHD, CF / CFIDS / ME and others -- who are following or considering following the NIDS protocol.
To Join: Send a blank email to NIDS@yahoogroups.com or join online.

001 ADD-ADHD
This restricted member support group is for parents who have school-aged children living in their home with ADHD, as well as other disabilities.
Listowner: Kimberly Zim
To Join: Send a blank email to 001add-adhd@yahoogroups.com or join online.

Adoption Support Groups

Go to the Directory of Adoption Support Lists

Allergy & Asthma Support Groups

Asthma Parents
Mailing list provided by Ed's Asthma Track for parents of children with asthma to discuss their questions and concerns. 
To Join: Send a blank email to asthma-parents-subscribe@yahoogroups.com or join online.

Families Dealing with Asthma 
A group for parents or members of families including children who have asthma. A place to ask questions, offer advice, vent, celebrate,and commiserate with other families who have "Been There, Done That"... 
To Join: Send a blank email to Families_Dealing_with_Asthma-subscribe@yahoogroups.com or joinonline.

Allergy
Allergy discussion group. Not a family mailing list, but may be of interest to family members. Moderated.
To Join: Send an email with the message SUBSCRIBE ALLERGY YourFirst Name YourLastName toLISTSERV@listserv.uark.edu or join online.
Listowner: Ballew Kinnaman

Eczema
A large international support group for eczema, based in the United Kingdom.
To Join: Send an email with the message SUBSCRIBE ECZEMA to LISTSERV@LISTSERV.ICORS.ORG or join via online.
Listowners: David Hough, Stuart Purdie, Brigit van Loggem, and Paula Ford

Eczema Parents Circle
A discussion group for parents of children with eczema. Having a child who suffers from eczema is sometimes difficult, and we as parents feel isolated from those who haven't "been there". This is a place to express how eczema has affected you as a parent as well as listen to others share their emotions and experiences.
To Join: Send a blank email to Eczemaparentscircle-subscribe@yahoogroups.com or join online
Listowner: Darlene Searle

Cel Kids (Celiac Kids)
Celiac/Coeliac Wheat/Gluten-Free children list. (There is also an adult list). 
To Join: Send email with the message, SUBSCRIBE CEL-KIDS FirstName LastName toLISTSERV@LISTSERV.ICORS.ORG or join online.

No Milk
Milk, Casein and Lactose-Free List. Includes families and individuals on these diets. 
To Join: Send an email with the message SUBSCRIBE NO-MILK to LISTSERV@LISTSERV.ICORS.ORG or join online.
Listowner: Max Desorgher

Autism / Aspergers / PDD Support Groups

Asperger
Mailing list for discussions of all aspects of Asperger Syndrome (AS) and other forms of high-functioning autism, including Pervasive Developmental Disorder (PDD). Subscription requires owner approval. A high volume list.
To Join: Send email with the message, SUBSCRIBE ASPERGER to listserv@listserv.icors.org or joinonline.
Listowners: Head Listowner - Ellen Dietrick; Co-listowners - Karen Reznek, Sandy Sebree, Phil Schwarz , Dave Spicer, Tee Forshaw, Barry Conner

Autism
Tthe oldest ongoing discussion list for autism, provides general autism support.

To Join: Send email with the message subscribe [password] [digest|nodigest] [your email address] toautism-request@lists.apana.org [Commands in brackets are optional.]
or join online.
Listowner: Carolyn Baird. Panel Representatives: Ray Kopp, Linda Carlton, Kevin Kramer

Autinet
An unmoderated parent support group and news service for Autism and Asperger's Syndrome, running since 1996.
To Join: Send the message with "SUBS" in the subject line to autinet@autinet.org. In your message to listowner Peter Wise include a little about yourself, your interest in Autism and Asperger's Syndrome, and your COUNTRY of residence (for statistical reasons).

Aspergers Support
Mailing list for parents of children with Asperger's Syndrome or High Functioning Autism.
To Join: Send a blank email to AspergersSupport-subscribe@yahoogroups.com or join online.

PDD BP KidS (Pervasive Development Disorder Bipolar Kids) 
This group is for parents and primary caregivers of children diagnosed with PDD (Pervasive Developmental Disorder), Autistic Spectrum Disorder (Autism, Asperger's Syndrome, PDD-NOS, Rhett's Syndrome, Childhood Disintigrative Disorder), and BP (Bipolar Disorder).
To Join: Send a blank email to PDD-BPkids-subscribe@yahoogroups.com or join online.

Home Schooling Aspies 
Support list for Christian moms who homeschool (or are seriously considering homeschooling) their children who have been diagnosed with Asperger's Syndrome (or suspect their child has Asperger's Syndrome). All are welcome to join, but there will be a Christian focus to many of the posts. We are here to encourage, support, and pray for one another as we do our best to teach our Aspies at home.
To Join: Send a blank email to homeschoolingaspies-subscribe@yahoogroups.com or join online.

Aut-2B-Home (Autism To Be Homeschooled)
Listserv for homeschooling children with autism. 
To Join: Send email with the message, SUBSCRIBE AUT-2B-HOME to LISTSERV@LISTSERV.ICORS.ORGor join online.

Autism Awareness Action
A moderately high volume group to help parents find autism related resources and support, not state specific but is associated with a Texas autism group.
To Join: Send a blank email to autism-awareness-action-subscribe@yahoogroups.com or join online.

Autism Aspergers 
A high quality, high volume support list where parents share stories, treatments, therapies, ideas, advice and support about their children with moderate to high functioning autism or Aspergers syndrome.
To Join: Send a blank email to Autism-Aspergers-subscribe@yahoogroups.com or join online.

Parenting Autism
An excellent, high volume parent support group to share the day-to-day experience of being a parent of an autistic child. 
To Join: Send a blank email to Parenting_autism-subscribe@yahoogroups.com or join online.

Autism Behavior Problems 
Helpful discussion, aid and support in dealing with these behaviors present in the autistic child. Support on topics for all ranges of behaviors...self stimulating, self injurious, aggressive, inappropriate etc and different ways of addressing these problems.
To Join: Send a blank email to AutismBehaviorProblems-subscribe@yahoogroups.com or join online.

Autism in Girls
Restricted membership! This is a high quality list for parents and professionals who wish to exchange information regarding treatment of autism in girls, how autism effect females in the family, and any other issues dealing with autism and females and/or the comparison of males and females with autism.
To Join: Send a blank email to Autism_in_Girls-subscribe@yahoogroups.com or join online.

Autism Adolescence
Autism Spectrum Disorders and adolescence support for parents who have Pre Teen, or teenaged children. Though all are welcome here. Please free to share your stories, advice, woes, rants, tears, and especially laughter here with us.
THIS IS A HIGH VOLUME LIST.. http://www.geocities.com/alleycatjo/Autism.html
Awaiting review.

Children with Autism
High volume parent support list for autism.
To Join: Send a blank email to children_with_autism-subscribe@yahoogroups.com or subscribe online.

Floortimers Floor Timers
A small group, but an important topic. Parents, caregivers, therapists, educators and related professionals who work with children using using a floortime approach share ideas and provide support for one another.
To Join: Send a blank email to floortimers-subscribe@yahoogroups.com or join online.

HDO Therapy for Autism
Hyperbaric Oxygen Therapy (HBOT), or more accurately, High Dosage Oxygen Therapy (HDOT} is fast becoming one of the more successful therapies for children with Autism. Autism is a neurological injury whether caused by toxicity, birth injury or unknown. Some 

amazing results are being obtained, especially with young children. 
To Join: Send a blank email to HDOTherapyforAutism-subscribe@yahoogroups.com or join online.

Verbal Behavior
A high volume moderated forum for teaching verbal behavior (VB) within a program of applied behavior analysis (ABA). Discussions include difficulties in the development of communication seen in most individuals with autism and other related disabilities, with an emphasis on functional language and motivational variables using ABA techniques.
To Join: Send a blank email to VerbalBehavior-subscribe@yahoogroups.com or join online. 
Listowner: Christina Burk ChristinaBurkABA@aol.com

Autism ABA 
The Autism and ABA list is an open, unmoderated forum for discussing anything related to autism. Much of our discussion centers around Applied Behavior Analysis (ABA), including areas of ABA such as teaching Verbal Behavior (VB) and Natural Environment Training (NET). We're a quiet list, but we have a healthy mix of parents, professionals, and others involved with autism in some way. 
To Join: Send a blank email to autismaba-subscribe@yahoogroups.com or join online.
Listowner: Christina Burk ChristinaBurkABA@aol.com

DTT-NET (Autism: AVB: ABA: Verbal Behavior) 
A moderated list for parents and professionals running home (and school) programs to discuss concerns and share their knowledge of Applied Verbal Behavior (AVB), a specialty within the field of Applied Behavior Analysis (ABA).
To Join: Send a blank email to DTT-NET-subscribe@yahoogroups.com or join online.
Listowners: Jenn Godwin and Steph Hulshof

ANDI_ADI (Autism Network for Dietary Intervention)
This is an ADVANCED autism-diet discussion group moderated by ANDI, the Autism Network for Dietary Intervention. The purpose of this list is to provide a forum for discussion regarding advanced dietary treatment options such as the Specific Carbohydrate Diet (SCD), the Body Ecology Diet (BED), grain-free, sugar-free, low oxalates, supplementation, and other dietary interventions for children with autism spectrum disorders. 
To Join: Send a blank email to ANDI-ADI-subscribe@yahoogroups.com or join online.

GF CF Kids (Gluten-Free Casein-Free Kids)
This high volume, unmoderated list provides discussion forum for parents of children on the autism spectrum who are avoiding gluten and casein and other substances in their children's diets. 
To Join: Send a blank email to GFCFKids-subscribe@yahoogroups.com or join online.

Enzymes and Autism
The Enzymes and Autism forum is a high volume list for the discussion of digestive enzymes (and many other types of supplements) and thier effect on the autistic spectrum/PDD, attention deficit, sensory integration, digestion/malabsorption, and food sensitivities/allergies. 
To Join: Send a blank email to EnzymesandAutism-subscribe@yahoogroups.com or join online.

Chelating Kids 2
A restricted discussion list of parents with children who have autism/ mercury poisoning and are using chelation.
To Join: Send a blank email to chelatingkids2-subscribe@yahoogroups.com or join online.
Listowner:

Gluten-Free Casein-Free Recipes
High volume group to share recipes for cooking a gluten-free, casein-free diet for chidren. 
To Join: Send a blank email to GFCFrecipes-subscribe@yahoogroups.com or join online.

ABMD (Autism BioMedical Discussion) 
High volume group for discussions by parents and professionals of research and biomedical interventions as they apply to the investigation and treatment of autistic spectrum disorders.
To Join: Send a blank email to abmd-subscribe@yahoogroups.com or join online.

Brain Injury Support Groups - see Neurological / Brain Impacts

Birth Defects / Congenital Support Groups

Cleft TAlk 
Mailing list for families who have children born with cleft palate or cleft lip defects.
To Join: Send the message, SUBSCRIBE CLEFT_TALK2 Your Real Name to majordomo@bmtmicro.com
Listowner: Joanne Green

Cleft Chat
For parents of children born with cleft lip and/or cleft palate. Our list is open to all to freely express their feelings, get support and to learn in a positive environment.
To Join: Send a blank message to cleftchat-subscribe@yahoogroups.com or join online.

FAS Link (Fetal Alcohol Syndrome)
Mailing list for people interested in Fetal Alcohol Syndrome/Fetal Alcohol Effects.
To Join: Send the message, SUBSCRIBE FASLINK to majordomo@listserv.rivernet.net 
Listmoderator: Bruce Ritchie

PD Heart (Pediatic Heart)
Active mailing list for families of children with Congenital Heart Defects (CHD) and Childhood Onset Heart Disease. (The Children's Health Information Network has a number of other pediatric heart lists. A complete set of their lists is at http://tchin.org/support/index.htm ) 
To Join: Send a blank message to: pdheart-on@tchin.org.or join online.
Listowner: Mona Barmash

CHD Families (Congenital Heart Defects)
A support group for resources and support for parents, grandparents and siblings of children born with Congenital Heart Defects. Affliated with Families Raising Awareness of CHD, One Heart At A Time.
To Join: Send blank email to CHDFamilies-subscribe@yahoogroups.com or join online.

Down Syndrome Groups

Down Syn (Down Syndrome)
A well established and active list for discussion of Downs Syndrome. Members include parents, siblings, other relatives, friends, therapists, physicians, and of course people with Down Syndrome.
To Join: Send an email with the message, SUBSCRIBE DOWN-SYN Your Real Name toLISTSERV@LISTSERV.NODAK.EDU or subscribe online
Listowner: Bill McGarry

Ups N Downs (Families Involved with Down Syndrome)
An international support group for family members of people with Down syndrome, in existence since 1995. The focus is on the family and not just the family member with Down syndrome. 
To Join: Send a blank email to UpsNDowns-subscribe@yahoogroups.com or subscribe online.

DownSyn Forum (Down Syndrome for New Parents)
An active open, moderated web based board for parents of children with Down Syndrome. Topics include prayer requests, education, PDD/autism, open discussion and more. To join, visit the DownSyn forum at http://www.downsyn.com/phpbb2/index.php

Downs Heart
Support and information for those whose child is facing heart surgery, who has had surgery, those whose condition is inoperable, and those families who are bereaved. This online community is linked to Down's Heart Group, a UK charity which provides support and information related to the cardiac issues associated with Down's Syndrome.
To Join: Send a blank email to Downs-Heart-subscribe@yahoogroups.com or subscribe online.

Mosaic DS · Mosaic Down Syndrome
A support list for parents whose babies/children/adult children have been diagnosed with Mosaic Down Syndrome.
To Join: Send a blank email to MosaicDS-subscribe@yahoogroups.com or subscribe online.

Down Syndrome
A list for parents of children with Down Syndrome to brag, talk about concerns, medical problems, schooling,therapy, and so on. A good group for parents of young chidren but apparenlty unmoderated.
To Join: Send a blank email to down_syndrome-subscribe@yahoogroups.com or subscribe online.

Homeschooling and Down Syndrome
Discussion list for families who are homeschooling or want to homeschool their child with Down Syndrome. 
To Join: Send a blank message to homeschoolinganddownsyndrome-subscribe@yahoogroups.com or subscribe online.

DS-Autism (Down Syndrome & Autistic Spectrum)
DS-Autism is a discussion list for families, parents, and professionals interested in the dual diagnosis Down Syndrome and Autism. The list is a service of the Down Syndrome & Autism Internet Information Center and Creating Solutions.
To Join: Send a blank email to ds-autism-subscribe@yahoogroups.com or subscribe online.
Listowners: Joan Guthrie Medlen, Donna Duffey, and Mary Beth Pilewski Paul.

Feeding Support Groups

G Tube
Support for those using feeding tubes (g-tubes etc.). Gtube is an unmoderated discussion and support group for family, caregivers and professionals who are working with people of all ages who have, have had, or are about to have, a feeding gastrostomy (g-tube) J-tube, NG-tube or GJ-tube.
To Join: Send the message SUBSCRIBE GTUBE YourFirstName YourLastName tolistserv@listserv.syr.edu or join online.
Listowner: Ward Scarf

Feeding
A great resource for parents of infants and young children with feeding disorders, especially those related to disability, premature birth or other developmental issues. Parents share information on medical treatments, feeding tips, and products.
To Join: Send a blank email message to feeding-subscribe@yahoogroups.com or join online.
Listowner: Laura Williams

Breastfeeding Reflux 
A discussion group to provide support and share experiences with those who are breastfeeding a baby with reflux and GERD. All moms of refluxers are welcome, regardless of the amount you are breastfeeding, the degree of reflux, or the age of your baby. 
To Join: Send a blank email message to breastfeedingreflux-subscribe@yahoogroups.com or subscribeonline.

Reflux Parents
For parents with older children (over 4 years) suffering from Gastroesophageal Reflux or related motility disorders.
To Join: Send a blank message to RefluxParents-subscribe@yahoogroups.com or join online
Listowner: Nancy Dougherty

Reflux Toddlers
For parents of children ages 2 - 4 years old suffering from GERD and related motility disorders.
To Join: Send a blank message to RefluxToddlers-subscribe@yahoogroups.com or join online
Listowner: Nancy Dougherty

Reflux Moms 5
For moms with babies under 2 years of age, suffering from Gastroesophageal Reflux Disorder. 
To Join: Send a blank message to Refluxmoms5-subscribe@yahoogroups.com or join online.
Listowner: Nancy Dougherty

GERD Support (Gastroesophageal Reflux Disease)
Support group for people with the painful disease GERD (acid reflux disease/heartburn) or those giving support to someone with GERD. This group is for adults - not children - but is relatively friendly and informative and not over run by spammers.
To Join: Send a blank message to gerdsupport-subscribe@yahoogroups.com or join online.

Infectious Diseases Support Groups

CMV (Cytomegalovirus) 
Cytomegalovirus (CMV) is a herpes type virus with complications ranging from unnoticed to devastating, especially dangerous to a developing fetus. To list a few: death, miscarriage, intracranial calcification, Cerebral Palsy, seizure disorder, deafness, visual impairment, profound delays and mental retardation, microcephally, mal-absorption difficulties, feeding difficulties, CMV retinitis. 
To Join: Write to listserv@listserv.syr.edu and put CMV in the body of the post or join online.
Listowner: Tina Konczol

GB Strep (Group B Streptococcus)
Group B Streptococcus (GBS) is a bacteria that is found in the in the vagina and/or lower intestine of 10-35% of all healthy, adult women. Approximately 8,000 babies in the U.S. contract serious GBS disease each year. Up to 20% of the babies who survive GBS-related meningitis may develop serious handicaps, including hearing or vision loss, varying degrees of physical and learning disabilities, and cerebral palsy.
To Join: Send blank email to gbstrep-subscribe@yahoogroups.com or join online.

Hepatitis-B
A mailing list where information and support regarding hepatitis B can be shared in an atmosphere of compassion and friendship. List members include those who are Hepatitis B sufferers, their family or friends, or any other interested parties.
To Join: Any message sent to HEPATITIS-B-ON@MAIL-LIST.COM will start the subscription process.
Listowners: Steve Bingham, Sheree Martin

P Kids-List
The primary mailing list for parents of kids with chronic viral infectious diseases. 
To Join: Send the message SUBSCRIBE to PKIDS-LIST-REQUEST@MAIL-LIST.COM or join online.

General Children's Disabilities (Special Needs Parenting)

Our Kids
An excellent, well-established support group for parents of children with physical and/or mental disabilities and delays. 
To Join: In the body of your email, send the message, SUBSCRIBE OUR-KIDS Your Real Name tolistserv@listserv.syr.edu or join online.
Listowner: Randy Ryan

Birth to Three Support
Support for parents and professionals in Birth to Three Programs or Early Intervention or ECI programs.
To Join: Send a blank message to BirthtoThreeSupport-subscribe@yahoogroups.com or join online.
Listowner: Bridget A. Bailey

Special Child Exchange Equipment Board
Discussion group and equipment exchange group to buy, sell, trade or donate equipment for special needs children. Helps families locate necessary medical supplies and/or durable medical equipment that is not being utilized. To Join, visit http://groups.yahoo.com/group/SCE-Equipment/

Child Dev Delays (Children with Developmental Delays)
Mailing list for parents of a child (or children) with developmental delays (speech and language, motor, cognitive, sensory, emotional and social, etc.). 
To Join: Send a blank message to childdevdelays-subscribe@yahoogroups.com or join online.

Parents of Severely Disabled Kids 
A support group for parents and families of children who are Severely/Profoundly disabled. Parents can find support for different disabilities including Cerebral Palsy Developmental Delays, Failure to Thrive, Feeding Tubes, Mentally Impaired, special needs, Spina Bifida, Seizures, Brain Injured, Scoliosis, CMV, Microcephaly, and many others as well.
To Join: Send a blank message to ParentsofSeverelyDisabledKids-subscribe@yahoogroups.com or joinonline.
Listowners: Judy, Lynne, and Christine

Rare Dis (Rare Disorders)
Rare Disorders mailing list for resources on any rare disorder and/or to network with other people with the same disorder. Not very active, but you can read the archives and if you post a question you will likely receive an answer.

To Join: Send the message, SUBSCRIBE RARE-DIS Your Name to LISTSERV@LISTSERV.ICORS.ORG or join online.
Listowner: Bill McGarry

CP-SK : Christian Parents Special Kids
A support group for Christian Parents parenting children with a wide variety of special needs.
To Join: Send a blank message to CP-SK-subscribe@yahoogroups.com or join online.
Listowner: Lisa Little

Our Special Needs Children
Support group for parents of Special Needs Children, who have any of the following: Hypotonia, Speech Language Disorders, Apraxia, Dyspraxia, Developmental Delays, Sensory Integration Dysfunction, APD, Autistic Tendencies, PDD. I want this to be a place to share information, such as new treatments, supplements, diets, therapies, doctor recommendations, or just to ask advice or get support.
To Join: Send an email to OurSpecialNeedsChildren-subscribe@yahoogroups.comn or join online.

Special Child Exchange
A place to trade, sell, or donate special needs equipment and related baby and children's supplies.
To Join: Send an email to SpecialChildExchange-subscribe@yahoogroups.comn or join online.
Listowner: Steve Gay

Genetic Support Groups

Families of Angelman Syndrome 
A place for families to talk about Angelman Syndrome and give each other support on raising a child with Angelman Syndrome.
To Join: Send a blank email to familiesofangelmansyndrome-subscribe@yahoogroups.com or joinonline.

ARPKD (Autosomal Recessive Polycystic Kidney Disease)
This list is for anyone who's lives have been affected by ARPKD Autosomal Recessive Polycystic Kidney Disease. Autosomal recessive polycystic kidney disease (ARPKD) is the most common heritable cystic renal disease occurring in infancy and childhood. 
To Join: Send a blank email to ARPKD-subscribe@yahoogroups.com or join online.

Cystic L (Cystic Fibrosis List)
Exchange of information and support specific to cystic fibrosis. Members include people with CF and those who share their lives: medical professionals, scientists, researchers, parents, grandparents, spouses, siblings, friends and significant others.
To Join: Send an email with the message SUBSCRIBE CYSTIC-L Your Real Name toLISTSERV@PEACH.EASE.LSOFT.COM or subscribe online.

Ped PID (Pediatric Primary Immune Deficiency)
This list brings together parents and caregivers of children affected by a Primary Immune Deficiency.
To Join: Send a blank email to PedPID-subscribe@yahoogroups.com or subscribe online.

Panhypopituitarism
This list is for parents and caregivers who have children with pituitary disorders. Discussion may also include disorders of the endocrine system, hypoglycemia, growth hormones and steriods.
To Join: Send a blank email to panhypopituitarism-subscribe@yahoogroups.com or join online.

Pierrerobin · Pierre Robin Network 
Pierre Robin Network is comprised of parents, caregivers, family members, medical professionals and adults with Pierre Robin Syndrome.
To Join: Send a blank email to pierrerobin-subscribe@yahoogroups.com or join online.

Rare Genetic Disorders (Triple X or Trisomy X Syndrome) 
This is a group for parents, parents-to-be, other family members, and the women themselves to share regarding the diagnosis of an extra X.
To Join: Send a blank email to raregeneticdisorders-subscribe@yahoogroups.com or join online.

Tri-Med
Discussion of medical issues related to Trisomy chromosmal disorders. The Trisomy Online also provides 5 different lists for Trisomy 18, Trisomy 13 and other related chromosomal disorders. Visit their website to see each topic.
To Join: Send an e-mail to Tri-Med-request@freelists.org with the word SUBSCRIBE in the subject line or join online.
Listowner: Karen Schuler

Torticollis Kids
For parents and caregivers of children with congenital muscular torticollis (CMT) to share information and ideas.
To Join: Send a blank email to Torticolliskids-subscribe@yahoogroups.com or join online.

TS Parents-3 (Turner Syndrome Parents)
A discussion group for parents of children with Turner Syndrome, a genetic disorder that affects about one in every 3000 girls.
To Join: Send a blank email to TSParents-3-subscribe@yahoogroups.com to or join online.

IEP Guide (Individual Education Plan) 
High volume group with reprinted articles, links and support for IEP, Special education, 504, etc. Be aware that you will receive by email an avalanche of archived files on the IEP process, upon joining.
To Join: Send a blank email to IEP_guide-subscribe@yahoogroups.com or join online

Dyspraxia Families
This British support group has been formed as a bridge for parents of dyspraxic children and adults with dyspraxia, based on the adult Dyspraxia Chat List. Dyspraxia (Apraxia) is the generic term used to cover a heterogeneous range of disorders affecting the initiation, organization and performance of action. Dyspraxia is also known as developmental coordination disorder and may also be present in people with autism spectrum disorder, dyslexia and dyscalculia, among others. It is a learning difficulty resulting from an immaturity of the way the brain processes information, so that messages not being fully transmitted to the body.
To Join: Send a blank email to DyspraxiaFamilies-subscribe@yahoogroups.com or join online.

Dyslexia Support
Mailing list is for the discussion of dyslexia to exchange ways of helping school aged children. Open archives.
To Join: Send a blank email to DyslexiaSupport-subscribe@yahoogroups.com or join online.

Dyslexia Support 2 
This list is a support list for parents of children who are dyslexic. 
To Join: Send a blank email to DyslexiaSupport2-subscribe@yahoogroups.com or join online.
Listowner: Annette Marshall

GT-Special (Gift Talented Special)
A support mailing list for parents of children who are gifted and also have a learning disability and/or other neurological problem(s).
To Join: Send an e-mail with the message subscribe gt-special to listserv@listserv.icors.org or joinonline.

GT-Spec-Home (Gifted Special Needs Homeschooling)
Home-schooling gifted children with special needs. 
To Join: Send an e-mail with the message SUBSCRIBE GT-SPEC-HOME to listserv@listserv.icors.org or join online.

HKWD (Homeschool Kids with Disabilities) 
The mailing list for issues related to teaching a child with any special educational need at home. 
To Join: Send an empty message to hkwd-subscribe@yahoogroups.com or join online.
Listowner: Maaja

Homeschooling Extraordinary Kids
For parents of children who are gifted in one or more areas but also have a learning difficulty, autism, etc..
To Join: Send an empty message to HomeschoolingExtraordinaryKids-subscribe@yahoogroups.com or join online.

Motor Impairment Mailing Lists

Bifida-L
The original mailing list for people with spina bifida as well as parents, siblings, and others.
To Join: Send a blank email to bifida-l-subscribe@yahoogroups.com or join online.

SB Moms N Dads (Spina Bifida Moms and Dads) 
Support list for families and caregivers of children with spina bifida and adults with spina bifida. An active list.
To Join: Send a blank email to SBMoms-N-Dads-subscribe@yahoogroups.com or join online.
Listowner: Kim Zink

Dysgraphia 
This list is for parents that have children with dysgraphia (difficulty with handwriting).
To Join: Send a blank email to dysgraphia-subscribe@yahoogroups.com or join online.

C-Palsy (Cerebral Palsy) 
Listserv for parents who have a child with Cerebral Palsy.
To Join: Send an email with the message, SUBSCRIBE C-PALSY Your Name tolistserv@listserv.icors.org or join online.
Listowner: Bill McGarry

CP PARENT (Cerebral Palsy Parent) 
Listserv for parents who have a child with Cerebral Palsy. 
To Join: Send an email with the message, SUBSCRIBE CPPARENT Your Name tolistserv@listserv.syr.edu or join online.
Listowner: Paul Sheridan

Hemi Kids (Hemiplegia Kids)
Listserv for parents of children with hemiplegia (a type of cerebral palsy) or parents of children who have had a pediatric stroke. 
To Join: Send an email with the message Subscribe HEMI-KIDS Firstname Lastname tolistserv@listserv.icors.org or join online.
Listowner: Nancy

I-CAN International Child Amputee Network
Listserv for parents of child amputees and adults who are congenital or early acquired amputees.
To Join: Send an email with the message, SUBSCRIBE I-CAN Firstname Lastname tolistserv@listserv.icors.org or join online.
Listowners: Bill Baugh

Kid Power
Support group for parents whose children are mildly affected by cerebral palsy or other 

disabilities. 
To Join: Send a blank email to KidPower-subscribe@yahoogroups.com or join online.
Listowner: April Hernandez

Neurological Brain Impacts Mailing Lists

Childhood Epilepsy
Active mailing list to support parents and other care-givers of children diagnosed with a form of epilepsy. 
To Join: Send a blank email to childhoodepilepsy-subscribe@yahoogroups.com or join online.

Parents of Children with Epilepsy
A parent group for childen with epilepsy.
To Join: Send a blank email to Parents-of-Kids-with-Epilepsy-subscribe@yahoogroups.com or joinonline.

PVL (PeriVentricular Leukomalacia)
A high quality mailing list for parents of children with Periventricular Leukomalacia.
To Join: Send a blank message to pvl-subscribe@yahoogroups.com or join online.
Listowner: Maureen Schneeberger

Hydranencephaly
Mailing list for parents, families and caregivers of children with hydranencephaly.
Subscription To Join: Send a blank email to hydranencephaly-subscribe@yahoogroups.com or joinonline.
Listowner: Barb Aleman

Plagiocephaly
Support group for families of children with Positional Plagiocephaly. "Plagio" is a deformation of the skull caused by any consistent external pressure such as inutero constraint, back sleeping, etc, or encouraged by torticollis, prematurity, etc
To Join: Send a blank email to Plagiocephaly-subscribe@yahoogroups.com or join online.

Microcephaly
Discussion list for parents of children (of any age) with Microcephaly and related developmental disabilities. Share stories about your kids ups and downs, get advice and support, or just have someone to "listen". 
To Join: Send a blank email to microcephaly-subscribe@yahoogroups.com or join online.

Newborn Jaundice 
This listserve is to provide information and emotional support to parent's of children diagnosed with kernicterus or hyperbilirubinemia (high bilirubin). Kernicterus is a rare neurological disorder characterized by excessive levels of bilirubin in the blood during infancy. Symptoms may include lack of energy (lethargy), poor feeding habits, fever, and vomiting. 
To Join: Send a blank email to newbornjaundice-subscribe@yahoogroups.com or join online.

NEURO Network (Neurodevelopmental Education Understanding Reorganization Options Network) 
Support group for parents whose children have been diagnosed with or are experiencing issues such as: SID (sensory integration dysfunction), RAD (reactive attachment disorder) or attachment issues, PTSD (posttraumatic stress disorder), ODD (oppositional defiant disorder), ADD/ADHD, anxiety, autism-spectrum disorders (including Aspergers and PDD-NOS), learning disabilities, and speech & language delays. Many of our children are adopted, although parents of biological children experiencing these issues are also welcome. 
To Join: Send a blank email to NEUROnetwork-subscribe@yahoogroups.com or join online.

PVL (PeriVentricular Leukomalacia)
This list is to provide support and information to parents of children with Periventricular Leukomalacia. Discussions are welcomed about finding more information, raising a child with this disability and for applauding their many achievements.
To Join: Send a blank email to pvl-subscribe@yahoogroups.com or join online.

TS Parents (Tourette's Syndrome Parents)
An email group for parents of kids who have Tourette's Syndrome and related disorders like ADHD, OCD, Bipolar and high functioning Autism. Chatty. Also several associated lists.
To Join: Send a blank email to TSparents-subscribe@yahoogroups.com or join online
Listowner: Patti

Obsessive Compulsive Disorder (OCD)

OCD and Parenting List
Online support group for parents of children with OCD. advised by Dan Suport for families of children with OCD. Professional advisors include: Dr. Geller (massgeneral.org/pediatricpsych/staff/geller.html), Gail B. Adams, Ed.D. (www.ocdawareness.com), Tamar Chansky, Ph.D. (www.worrywisekids.org), and Aureen Wagner, Ph.D. (www.lighthouse-press.com).
To Join: Send a blank email to ocdandparenting-subscribe@yahoogroups.com or join online.
List administrtor: Louis Harkins. Moderators: Wendy Birkhan, Chris Castle, Cindy Joye, Kathy McDonald, and Gail Pesses.

OCD Family
Our family support group is for husbands, wives, sisters, brothers, friends, other loved ones of those afflicted with OCD. We have a fair balance of parents who have children afflicted w/OCD as well as wives with a husband who has OCD, and husbands who have a wife w/OCD.
To Join: Send a blank email to ocd-family-subscribe@yahoogroups.com or join online.

Prematurity Mailing Lists

Go to Premie Mailing Lists, Groups, and Forums

Sensory Integration Mailing Lists

Sensory Integration Group 
Discussion group for sensory integration; for information, education, and therapy related to sensory integration; for support of families dealing with sensory issues, children having behavioral and/or neurological difficulties, identifying triggers, and looking at solutions.
To Join: Send a blank email to sensoryintegrationgroup-subscribe@yahoogroups.com or join online.

Sensory Integration Dysfunction
Sensory Integration Dysfunction is as difficult to deal with for the parents, as it is for the children that are diagnosed with it. Here, we can swap ideas and get support and advice on how to deal with your child, the school system, etc...
To Join: Send a blank email to sensoryintegrationdysfunction-subscribe@yahoogroups.com or joinonline.

TLC-SID (Treat the underLying Causes of Sensory Integration Dysfunction) 
This group is for parents and professionals who want to talk about how to Treat the underLying Causes of Sensory Integration Dysfunction (hence TLC-SID). The discussions of this group are related to diet, supplements, homeopathy, alternative therapies/treatments, medical testing or anything related to helping us understand the underlying problems so that they can be addressed most effectively. 
To Join: Send a blank email to TLC-SID-subscribe@yahoogroups.com or join online.

Shadow Syndrome Kids
Mailing list for parents of children that have been diagnosed with mild forms of disorders like Asperger's Syndrome,CAPD,SID,ADD, ADHD or have a number of comorbid syndromes making it difficult to understand what is going on with him/her. 
To Join: Send an email to ShadowSyndromeKids-subscribe@yahoogroups.com or join online.

Shadow Syndrome Teens
Mailing list for parents of children that have been diagnosed with mild forms of disorders like Asperger's Syndrome,CAPD,SID,ADD, ADHD or have a number of comorbid syndromes making it difficult to understand what is going on with him/her. 
To Join: Send an email to ShadowSyndromeTeens-subscribe@yahoogroups.com or join online.

Speech & Communication Mailing Lists

Parent Deaf HH (Parents of Deaf or Hard of Hearing Children)
Support group for parents of deaf or hard of hearing children. This long term discussion list is sponsored by the American Society for Deaf Children (ASDC) 
To Join: Send the message SUBSCRIBE PARENTDEAF-HH to PARENTDEAF-HH@LISTSERV.KENT.EDU or subscribe online.
Listowners: Benna Timperlake and Sherry Ernsberger

Apraxia Kids
A resource, discussion list for families of children with developmental apraxia of speech (verbal dyspraxia) and the professionals
that care about them.
To Join: In the body of your email, send the message, SUBSCRIBE APRAXIA-KIDS toLISTSERV@LISTSERV.SYR.EDU join online 
Listowners: Sharon Gretz

Auditory Processing
Individuals who have normal hearing but have difficulty with discriminating words, listening in background noise, trouble following ongoing conversation, and seem to have trouble paying attention when others are talking, may have a central auditory processing disorder (CAPD). Open archives.
To Join: Send a blank email to AuditoryProcessing-subscribe@yahoogroups.com or subscribe online.

CAPD (Central Auditory Processing Disorders)
Central auditory processing disorders, primarily parents and educators. High volume, active list.
To Join: Send the message, SUBSCRIBE CAPD to listserv@listserv.icors.org or join online.
Listowner: Jay Lucker

Communicating
Parents and professionals help children with earning disAbilities (Autism, Down Syndrome, PDD/NOS, etc.) communicate effectively using the methods of Dr. James D. MacDonald of "Communicating Partners."
Subscription: Send a blank email message to communicating-subscribe@yahoogroups.com or joinonline.
Listowner: Jenny Wendling

Late Talkers
Latetalkers is a discussion forum for anyone interested in the late development of speech in children, regardless of cause. It is a low volume and friendly list.
Subscription To Join: Send a blank email to Latetalkers-subscribe@yahoogroups.com or join online.
Listowner: Karen

Childrens Apraxia Net 
Late talker/speech delay vs. apraxia? The Cherab Foundation is a nonprofit organization working to improve the communication skills and education of children with speech and language delays and disorders. While we outreach to any "late talker" our area of emphasis is verbal and oral apraxia, severe neurologically-based speech and language disorders that hinder children's ability to speak.
To Join: Send a blank email to childrensapraxianet-subscribe@yahoogroups.com or join online.

PACT (Promoting Augmentative Communication Together) 
A listserv for anyone interested in the field of augmentative and alternative communication (AAC).
To Join: Send a blank email to PACT-subscribe@yahoogroups.com or join online.
Listowner: Pam Harris

Vision Mailing Lists

APHAKIC (Association of Parents Having A Kid In Contacts)
Association of Parents Having A Kid In Contacts is designed to provide support for parents and health care professionals caring for young children who have had cataracts. Despite the name, glasses-wearers are welcome.
To Join: Send a blank message to aphakic-subscribe@yahoogroups.com or join online.

Blind Home Schooler
A small but active group, mostly parents with a few VI teachers and aides. All participants are interested in homeschooling, some full time and others as supplemental education.
Subscription To Join: Send a blank email to blindhomeschooler-subscribe@yahoogroups.com or joinonline.
Listowner: Debbie Day

BVI Parents (Blind or Visual Impairment)
BVI-Parents is a list for parents of children who are blind or visually impaired to network and share ideas and experiences.
Subscription address: Send an e-mail to bvi-parents-subscribe@yahoogroups.com or join online.
Listowner: Sarah Blake

Cortical Vision Impairments
Please join if you are interesting in discussing CVI and issues with that diagnosis.
Subscription address: Send an e-mail to Corticalvisionimpairments-subscribe@yahoogroups.com or joinonline.
Listowner: Bridget A. Bailey

Lazy Eye
A an acitive support list for parents of children with amblyopia, strabismus or other conditions associated with "lazy eye." 
Subscription address: Send an e-mail to lazyeye-subscribe@yahoogroups.com or join online.
Listowner: Kate

• Charities that fund equipment

  By Lena Loopy Court in Children DLA days out Discounts tips and advice Disability Living Allowance (Files) ·Edit doc

  The ACT Foundation (www.theactfoundation.co.uk)

  ACT's grants generally fall into the following areas: building (funding modifications such as stairlifts, bathroom adaptations and vehicle adaptations), equipment (provision of specialised wheelchairs, other mobility aids and equipment including medical equipment to assist independent living) and financial assistance towards the cost of respite breaks. They will not make grants which would replace statutory funding and/or which would pay for work that has already taken place or equipment already purchased or on order.

   

  Action for kids (www.actionforkids.org)

  Action For Kids is a national charity working with children and young people with physical and learning disabilities and their parents and carers. They help disabled children, young people, their parents and carers in three main ways: by providing mobility aids, work related learning and by offering family support services.

   

  Caudwell Charitable Trust (www.caudwellchildren.com)

  Caudwell Children assists special children throughout the UK, with direct donations of treatment, therapy, specialised equipment and dying wish holidays. To qualify for funding the child must be 18 or under, have an illness or disability and live in the UK.

   

  Cerebra (www.cerebra.org.uk)

  Cerebra grants are to help children (aged 16 or younger) who have disabilities because of a brain related condition or injury. The condition may be of a physical nature, a learning disability or both. Cerebra offer direct and practical assistance to improve the quality of life of children and young people, e.g. sensory toys, tricycles and quadricycles and touch screen computers. Applications must be supported by two references, one of which must be from a medical professional. Grants are paid to suppliers, not directly to the child/family.

   

  Children Today Charitable Trust (www.childrentoday.org.uk/)

  Children Today raises funds to provide special equipment for children and young people with disabilities throughout the UK. Their aim is to ensure that every disabled child and young person fulfils their potential and leads an active childhood. Funds donated by their supporters enables them to provide grants to purchase special equipment such as: electric wheelchairs, walking aids, trikes, educational toys (specially designed for children with disabilities), communication aids, adapted car seats, lifting and sleep equipment.

   

  Family Action (www.family-action.org.uk)

  Family Action has small grants available for medical treatment, services, facilities or equipment (including communication aids) for those who are sick or physically disabled. Supporting evidence is required from a relevant professional. There is also a general grants program which can meet needs such as clothing, fuel bills and household needs such as beds, cookers and washing machines. In addition to providing general grants, Family Action also provide grants for educational needs, particularly for the additional costs associated with education such as travel, books and equipment. Assistance is primarily targeted at families and individuals on low incomes, particularly those living on benefits. Funds are not available for items covered by statutory funding.

   

  Family Fund (www.familyfund.org.uk)

  The Family Fund helps low-income families caring for a severely disabled child up to age 17 in Scotland and Northern Ireland and up to age 18 in England and Wales. They give grants for things that make life easier and more enjoyable for the disabled child and their family, such as washing machines, driving lessons, hospital visiting costs, computers and holidays. Family Fund cannot assist where there is a responsibility on a statutory agency to help with the requested item.

   

  Independence at Home (www.independeathome.org.uk)

  Independence at Home provide grants for people with a disability or long-term illness towards the cost of adaptations, equipment or other things to help you to manage at home. The grant must go towards an item to assist a child to live at home. Independence at home cannot provide grants when the item may be provided through public funds. Applications must be supported by a professional involved in the child's care, usually an occupational therapist or a social worker.

   

  The Jennifer Trust for Spinal Muscular Atrophy (www.jtsma.org.uk)

  The Jennifer Trust has an equipment panel that meets quarterly and can make awards towards the costs of specialist pieces of equipment. They equipment must be needed by someone with spinal muscular atrophy and the application must be for an item that is not provided by the NHS or Social Services.

   

  Joseph Patrick Trust (www.muscular-dystrophy.org)

  The Joseph Patrick Trust (JPT) is the welfare trust of the Muscular Dystrophy Campaign. The trust provides financial support towards specialist equipment to help promote mobility and independence for people with muscular dystrophy, or a related muscle disease. For example, powered wheelchairs, adapted computers and electric beds. The grants cover pieces of equipment that the health and social services do not provide, but which are still vital for maintaining independence and quality of life.

   

  Lifeline 4 Kids (www.lifeline4kids.org)

  Lifeline 4 kids provides essential equipment to help improve the quality of life for children (0-18 years) with disabilities and special needs. For the individual child they provide the full spectrum of specialised equipment such as electric wheelchairs, mobility aids and varying items including specialised computers. They are also one of the only UK charities prepared to help a special needs child from a low-income family with essential smaller items such as shoes, clothing, bedding and specialist toys.

   

  Newlife Foundation for Disabled Children (www.newlifecharity.co.uk)

  Newlife provides grants for equipment for disabled children. The equipment applied for must be essential and disability relevant. The equipment can vary from a wheelchair or a bed through to a communication aid and therapy equipment shed, they have also funded equipment such as replacement clothing and braille machines. Newlife do not fund adaptations and fixtures to homes. All applications need to be supported by professionals who can specify the particular type of equipment needed in the interest of the children's welfare, safety and benefit. The grants are open to benefit all seriously disabled and terminally ill children that are permanently resident in the UK and who are 18 years or under. Newlife don't means test, but due to limited funds they do take a view of the whole circumstances of the family.

   

  The Nihill Armstrong Trust (www.nihalarmstrongtrust.org.uk)

  The Nihill Armstrong Trust is a small charity that provides children (up to and including 18 years of age) with cerebral palsy with essential pieces of equipment, communication aids or specific services that their local authority does not provide. The grants are for equipment items under £ 2000 and the application must be supported by the child's doctor, school, social worker, health visitor, speech, occupational therapist or physiotherapist.

   

  React (Rapid Effective Assistance for Children with potentially Terminal illness) (www.reactcharity.org)

  React is a charity working to improve the quality of life for financially disadvantaged children with life-limiting illnesses living in the UK. They supply a wide range of equipment from specialist wheelchairs, beds, baths, and mobility aids, to essential everyday items like washing machines and tumble dryers.

   

  Strongbones Childrens Charitable Trust (www.strongbones.org.uk)

  Strongbones have funds available to donate towards arthritis, scoliosis, brittle bone disease and all other conditions of the bone. To be eligible the child must be under 18 years of age, and suffer from one of these ailments. They provide grants for medical equipment, computers/software, toys, sensory equipment, short breaks away, days out and proven household bills. Grants are normally £ 250 per child, but this figure is open to discussion depending on the child's circumstances.

   

  Variety Club, The Children's Charity (www.varietyclub.org.uk)

  The Variety Club works to help improve the lives of sick, disabled and disadvantaged children and young people up to the age of 19 years across the UK, providing basic items that will improve the lives of individual children. Each year they donate electric wheelchairs, specialist beds, car seats, sensory equipment, standing frames and many other items that can change the life of a child in need.

   

  Whizz-Kidz (www.whizz-kidz.org.uk)

  Whizz-Kidz provides essential mobility equipment - powered or manual wheelchairs and recreational equipment such as trikes - that are customised to meet individual children's needs. The service ensures children get the right mobility equipment, advice and training at the right time. The wheelchair training programme includes improving the use of your wheelchair, new wheelchair skills and road safety awareness.