ADDISS

http://www.addiss.co.uk

The National Attention Deficit Disorder Information and Support Service. We provide people-friendly information and resources about Attention Deficit Hyperactivity Disorder to anyone who needs assistance - parents, sufferers, teachers or health professionals. Whatever you're looking for in ADHD, we'll do our best to help.

Advance

http://www.advanceuk.org/

Our vision is to transform the lives of people with a disability or mental health condition by providing the best quality housing, support and employment services. We want to enable our customers to live the lives they choose, achieve their personal goals, feel valued and know their voices are heard.

Afasic

https://www.afasic.org.uk/

We are the experts on getting the right help for children and young people with speech, language and communication difficulties.  We also offer a ‘listening ear’ if you just want to talk to someone who understands.  No query is too small or too silly.

Ambitious About Autism

https://www.ambitiousaboutautism.org.uk/

Ambitious about Autism is the national charity for children and young people with autism. We provide services, raise awareness and understanding, and campaign for change. Through TreeHouse School, The Rise School and Ambitious College we offer specialist education and support. Our ambition is to make the ordinary possible for more children and young people with autism. 

Amy and Friends

https://www.amyandfriends.org/

Support and information for those with Cockayne Syndrome (CS) and Trichothiodystrophy (TTD).

 

Angelman Syndrome Foundation

https://www.angelman.org

The mission of the Angelman Syndrome Foundation is to advance the awareness and treatment of Angelman syndrome through education and information, research, and support for individuals with Angelman syndrome, their families and other concerned parties. We exist to give all of them a reason to smile, with the ultimate goal of finding a cure.

Anna Kennedy Online

https://annakennedyonline.com/

The charity promotes its mission of disability equality by developing and delivering training, providing legal advice, helpline, social media, roadshows and talks around the UK by raising awareness of the challenges faced by people with disabilities and also by its advocacy efforts with and on behalf of people with disabilities.

 

Autism Connect

https://www.autismconnect.com/

Autism Connect was created to bridge the gap between parents and professionals and between information and action. Whereas some parents are content with following the standard medical and rehabilitation options, there are other parents who believe in being proactive and searching out newer and alternative treatment options that they believe could benefit their child.

Autism Directory (The)

https://www.theautismdirectory.com/

Find autism friendly resources in your local area and beyond. From CAMHS and coffee shops to SaLT's and special schools you can find them here.

Autism East Midlands

https://www.autismeastmidlands.org.uk

To advocate, provide and develop high-quality services, information, and support, in partnership with others, for all those whose lives are affected by autism.To recognise and respond to the needs of the individual, enabling people with autism to live their lives with dignity, choice and independence.Our well trained and passionate staff offer a wide range of services to help individuals to live their lives the way they want.

Autism West Midlands

https://www.autismwestmidlands.org.uk/

Bibic

https://bibic.org.uk/

A national charity that exists to maximise the potential of children and young people with conditions affecting their social, communication, sensory, motor and learning abilities.  Our team of high experienced developmental therapists provide assessments and design tailored therapy programmes for every child and family to help:

- Children and young people manage their difficulties, to cope better in the world around them.

- parents and carers understand their child's behaviour and needs.

- teachers support struggling children emotionally and educationally.

Brain Injury Trust (The)

https://childbraininjurytrust.org.uk/

Today the Child Brain Injury Trust is the leading voluntary sector organisation (registered charity and company limited by guarantee) providing non-medical services to families affected by childhood acquired brain injury across the UK.

Brainwave

https://www.brainwave.org.uk/

Brainwave is a charity that exists to help children with disabilities and additional needs to achieve greater independence by aiming to improve mobility, communication skills and learning potential through a range of educational and physical therapies, and the children we work with have a range of conditions including: autism, brain injuries such as cerebral palsy and genetic disorders such as Down’s syndrome.

Calibre Audio Library

https://www.calibre.org.uk/

Calibre Audio Library is a national charity providing a subscription-free service of unabridged audio books for adults and children with sight problems, dyslexia or other disabilities, who cannot read print.

Cerebra

http://www.cerebra.org.uk/

Our Mission is to listen to families that include children with brain conditions. We use what they tell us to inspire the best research and innovation. Then we help them put the knowledge into practice so they can discover a better life together.

Cerebral Palsy Guidance

https://www.cerebralpalsyguidance.com

Cerebral Palsy Guidance was created to provide answers and assistance to parents of a child with cerebral palsy. Our goal is to reach as many members of the cerebral palsy community as possible, building up a network of support, as well as providing necessary assistance. We cover cerebral palsy from all angles–from symptoms, causes, and treatment, to daily living information, such as communication and transitioning to adulthood articles.

Child Growth Foundation (CGF) (The)

http://childgrowthfoundation.org/

A leading UK charity focusing on the support and management of rare growth conditions affecting children and adults. We have many parents and children who are members, as well as a large and active adult membership.

Cystic Fibrosis Trust

https://www.cysticfibrosis.org.uk

Whatever you're going through, we have a range of practical and financial support to help lighten the load, as well as a number of resources and publications for you to download.

Daisy Garland (The)

http://www.thedaisygarland.org.uk/

We aim to improve the quality of life for children with difficult to control epilepsy accompanied by developmental delay.

Down’s Heart Group

https://dhg.org.uk/

A charity offering support and information relating to heart conditions associated with Down's Syndrome.

Down’s Side Up

http://www.downssideup.com/

I don't want other parents to feel the overwhelming despair I did in the early days, due to my own ignorance, or to waste precious time getting over the shock of Down's syndrome. I can't turn back the clock and relive those early days, but I can buy time for new parents and support them. Through our words and pictures, our resources and by bringing the community together, we aim to support other families at what can be a difficult transition in the early days.

Downs Syndrome Association

https://www.downs-syndrome.org.uk

Here you will find answers to questions that we are often asked about Down’s syndrome. This information will help you to separate the facts from some common misconceptions. If you do not find what you are looking for ring our helpline and speak to one of our specialist advisors.

Dyslexia-SplD-Trust (The)

http://www.thedyslexia-spldtrust.org.uk/

The Trust is a collaboration of voluntary and community organisations with funding from the Department for Education to provide reliable information to parents, teachers, schools and the wider sector. It acts as the important communication channel between government, leading dyslexia organisations, parents, schools, colleges, teachers and the sector.

Dyspraxia Foundation (The)

https://dyspraxiafoundation.org.uk

The Foundation seeks every opportunity to increase understanding of Dyspraxia, particularly among professionals in health and education and encourages its local groups to do the same. It continues to encourage the smaller local groups to thrive and develop their own ideas and to distribute information and fundraise for themselves.

Easy Heath

http://www.easyhealth.org.uk/content/about-website

Easyhealth was made so that people know where to find ‘accessible’ health information. ‘Accessible’ information is information that uses easy words with pictures.  There are over 500 leaflets on Easyhealth, made by many different organisations. You can print off nearly all the leaflets straight away.

Elizabeth Foundation (The)

http://www.elizabeth-foundation.org/

The Elizabeth Foundation is a national charity supporting infants and pre-school children with hearing loss and their families. It helps babies and children with all degrees of hearing loss learn to listen and speak. It does this by providing pre-school education services at its Family Centre, along with help, support and advice for families all over the UK.

Epilepsy Action

https://www.epilepsy.org.uk/

Epilepsy Action has an extensive network of branches, coffee and chat groups and volunteers throughout the UK. These groups provide local support to people with epilepsy, their family and friends and professional carers.

Fragile X Society (The)

http://www.fragilex.org.uk/

The Fragile X Society is here to provide information and support to individuals and families affected by Fragile X Syndrome, as well as the professionals working with them.

Future of Down’s

http://www.futureofdowns.com/

Future of Down’s is a website run by parents of children with Down’s syndrome for anyone who needs us! Whether you already have a baby or child with Down’s syndrome, you are pregnant and want advice on screening and tests or have just received a positive diagnosis following an amnio or CVS, we are here for you!

Genetic Alliance

https://www.geneticalliance.org.uk

We produce information for patients, families and anyone interested in genetic conditions. Here you’ll find information about the basics of genetics and inheritance of genetic conditions, information about research, different types of genetic testing, genetic services in the UK and reproductive techniques for people at risk of passing on a genetic condition, as well as information for living with a genetic condition and much more.

Heartline

https://www.heartline.org.uk/

Your Heartline supports children with heart disorders and their families, whatever the condition, wherever it is treated.

I CAN

https://www.ican.org.uk/

We are experts in helping children develop the speech, language and communication skills they need to thrive in a 21st century world.  Our vision is a world where all children have the communication skills they need to fulfil their potential. Our mission is to ensure that all children with communication difficulties are identified and supported so that they’re not left out or left behind

Klinefelter’s Syndrome Association

https://www.ksa-uk.net/

The Klinefelter’s Syndrome Association (KSA) offers support and information to all affected by, or having an interest in, Klinefelter’s Syndrome (KS) and XXY.Through this website and our helpline information is available which can assist employers, teachers, social workers and the medical professions, amongst others, who come into contact with people diagnosed with KS and XXY.

Living Paintings

https://www.livingpaintings.org/

Living Paintings is a charity that produces Touch to See books for blind and partially sighted people of all ages.

LOOK-UK

http://www.look-uk.org/

LOOK-UK supports young people and families living with a vision impairmentAre you a young person up to the age of 29 and have a vision impairment, or are you a parent of a vision impaired child? Then we want to hear from you.LOOK is here to help you improve your self-confidence, develop skills and make new connections.

Mencap

https://www.mencap.org.uk/

The services we provide range from round-the-clock care to helping someone join in with local leisure activities, providing advice and information on things like employment and education, helping someone to live independently for the first time, and even things like reporting a crime to the police.  In a nutshell, we try to help in any area of a person’s life where they need support.

Metabolic Support UK

https://www.metabolicsupportuk.org

Family Advice Service – providing free, impartial and confidential advice and information from diagnosis and beyond, navigating patients through complex pathways of support and treatment, as well as practical advice and a listening ear in times of difficulty.  They also provide Awareness and Advocacy and Information and Research.

National Autistic Society

https://www.autism.org.uk/

We provide life-changing information and advice to millions of autistic people, their families and friends. And we support professionals, politicians and the public to understand autism better so that more autistic people of all ages can be understood, supported and appreciated for who they are.

National Deaf Children’s Society (The)

http://www.ndcs.org.uk/

We help families give the best possible support to their deaf child every step of the way. Children Deaf children and young people are at the heart of our work. We make sure their needs come first, and we help others do the same.  We give expert unbiased support to help deaf children and their parents make informed choices about their lives.

Reach

https://reach.org.uk/

Helping children with upper limb differences live life without limits.  We recognise that different families want different levels of support, and we tailor our approach to suit them.  We’re there to provide resources, support and practical advice; whatever our families tell us they need.

Research Autism

http://researchautism.net/

This website is aimed at anyone with an interest in autism.  This includes people on the autism spectrum, parents and carers, service providers and policy makers.  this website provides up-to-date, scientifically reliable information about autism.  it provides information about some of the issues, problems and challenges facing individuals on the autism spectrum.  it also provides information about a wide range of treatments, therapies and services used to help them.

Rett UK

http://www.rettuk.org/

We are the only UK charity providing professional family support, information and advice. We aim to maximise the potential of people with Rett syndrome and minimise the impact.

Royal National Institute of Blind People (RNIB)

https://www.rnib.org.uk/

The UK’s leading charity supporting blind and partially sighted people. We offer practical and emotional support to those that need us, so they can continue living life to the full. 

Royal Society for Blind Children

https://www.rsbc.org.uk/

We provide a range of services in London and across England and Wales for blind and partially sighted children and young people, their families, and the professionals who work alongside them.

Scope

https://www.scope.org.uk

Scope exists to make this country a place where disabled people have the same opportunities as everyone else. Until then, we’ll be here. We provide support, information and advice to more than a quarter of a million disabled people and their families every year. We raise awareness of the issues that matter. And with your support, we'll keep driving change across society until this country is great for everyone.

Shine Charity

https://www.shinecharity.org.uk/

Shine provides specialist support pre-birth and beyond for anyone living with spina bifida and/or hydrocephalus, and to parents, families, carers and professional care staff. Shine enables people to get the best out of life.

Sickle Cell Society

https://www.sicklecellsociety.org/

We understand that sickle cell disorders uniquely affect people, and can manifest into a range of further conditions. We also understand that a sickle cell disorder affects the wider social support network. That’s why we support any individual affected by sickle cell, including family members, friends, employers, teachers and healthcare professionals.

Snowdrop

https://www.snowdrop.cc

We provide programmes of developmental stimulation for children who have a wide variety of diagnoses, such as 'cerebral palsy, autism, ADHD, learning difficulties, developmental delay, PDD and many more.  We also provide treatment for children who have a variety of genetic disorders.

SOFT

https://www.soft.org.uk

Support and help with families affected by Trisomy 13 and 18.

Steps

https://www.steps-charity.org.uk/

Steps is the national charity working for all those whose lives are affected by childhood lower limb conditions.  Whatever the lower limb condition, whatever the stage of life and whatever the reason, Steps is here for those families.  By providing a sympathetic ear, clear information and helpful advice – all combined with the reassurance of years of experience – we help families to find the best way forward.  And we do much more besides….

SWAN UK

https://www.undiagnosed.org.uk/

SWAN UK (syndromes without a name) is the only dedicated support network available for families of children and young adults with undiagnosed genetic conditions in the UK. It is run by the charity Genetic Alliance UK.

Tourettes Action

https://www.tourettes-action.org.uk/

Tourettes Action works in England, Wales and Northern Ireland and is the leading support and research charity for people with Tourette Syndrome and their families. We want people with TS to receive the practical support and social acceptance they need to help them live their lives to the full.

Turner Syndrome Support Society

https://tss.org.uk/

The Turner Syndrome Support Society offers support, advice and information to women and girls with Turner Syndrome and their families.

Unique

https://www.rarechromo.org

We aim to provide specialist information relating to many hundreds of different rare chromosome disorders and autosomal single gene disorders, to inform parents, carers and the professionals working with them.

VICTA

https://www.victa.org.uk/

VICTA supports children and young people who are blind or partially sighted and their families across the UK. If you are the parent of a blind or partially sighted child or young person or you are visually impaired yourself and under the age of 29 then VICTA can help.

Young Epilepsy

https://www.youngepilepsy.org.uk/

Young Epilepsy is the national charity supporting children and young people aged 25 and under with epilepsy and associated conditions, as well as their families. We exist to improve the lives of children and young people with the condition to enable them to fulfil their potential and ensure they have the best quality of life.