If you would like to be included in this list please email admin@booksbeyondwords.co.uk


·  ADHD On-line support group

Our objective is to promote awareness to AD/HD (Attention Deficit/Hyperactivity Disorder) and to provide information and as much free practical help as we can to those with the condition, both adults and children, their families in the UK and around the World via this website.

·  Action on Hearing Loss

Award-winning website containing information for deaf people on services, support and resources.

·  The Alzheimer’s Society

The leading support and research charity for people with dementia, their families and carers. Their website offers lots of information and useful resources on the subject of Dementia.

·  American Association on Intellectual and Developmental Disabilities

AAIDD, (formerly AAMR -- American Association of Mental Retardation) is the oldest and largest interdisciplinary organization of professionals and citizens concerned about intellectual and developmental disabilities.

·  Angelman Syndrome Support Education and Research Trust (ASSERT)

Assert is a United Kingdom based support group. We are all volunteers who have direct contact with Angelman Syndrome. The majority of the trustees are parents or relatives of children or adults with Angelman Syndrome. We also have a panel of experts who are able to answer and advise on more complex questions. Many of these experts are recognised worldwide in their fields of expertise relating to Angelman Syndrome.

·  Ann Craft Trust

National Association working in the interests of people with Learning Disabilities who may be at risk of abuse. Has useful publications and links to related websites.

·  Beth Webb

Illustrator Beth Webb has worked on many of the books in the Books Beyond Words series.

·  British Institute of Learning Disabilities

BILD is the British Institute of Learning Disabilities. We want people with learning disabilities to be valued equally, participate fully in their communities and be treated with dignity and respect.

·  BDIG Brent Disability Information Gateway

Empowering Brent people with disabilities aged 18 to 60 to access information and advice. The first place to look for signposting, information and advice for Brent people with disabilities aged 18 to 60 to access services that support and enhance their life. BDIG hold fortnightly Information Sessions about topics which affect you, as well as Focus Groups which are chosen by you.

·  Care Quality Commission

We make sure hospitals, care homes, dental and GP surgeries, and all other care services in England provide people with safe, effective, compassionate and high-quality care, and we encourage them to make improvements.

·  Care and Support Jargon Buster

A plain English guide to the most commonly used care and support words and phrases, and what they mean.  

·  Catherine Brighton

An artist who has illustrated several Books Beyond Words titles.

·  Contact A family

Contact a Family is the only national charity that exists to support the families of disabled children whatever their condition or disability. With over 30 years of experience, our vision is that families with disabled children are empowered to live the lives they want and achieve their full potential, for themselves, for the communities they live in, and for society. It's why we offer support, information and advice to over 340,000 families each year and campaign for families to receive a better deal.

·  Cruse Bereavement Care

Cruse Bereavement Care is the national organisation for bereaved people. Some Cruse branches have bereavement supporters who work with people with intellectual disabilities. Cruse provides information about local bereavement support services and also gives welfare advice.

·  Diabetes UK

The UK’s leading Diabetes charity. Information, resources and support can be found on their website.

·  Dimensions

Dimensions is a specialist provider of a wide range of services for people with learning disabilities and people who experience autism. They are a not-for-profit organisation, supporting around 3,500 people and their families throughout England and Wales.

·  Down's Syndrome Association UK

The Down's Syndrome Association (DSA) is the only organisation in England, Wales and Northern Ireland which supports people with Down's syndrome at every stage of life.

·  Easy Health

Site for people to find health information that is easy to understand, in order to make it simpler for people with learning disabilities to know more about their health.

·  ENABLE Scotland

ENABLE Scotland is a dynamic charity run by its members. They campaign for a better life for children and adults who have learning disabilities. You can find lots of useful resources on their website.

·  Epilepsy Action

Website containing "everything you need to know about epilepsy". The site also contains an Email Helpline service which will do its best to email you a reply to an issue which is not included on the site within 48 hours.

·  Epilepsy Passport

The Epilepsy Passport contains essential up-to-date information about a child or young person’s epilepsy, including their emergency care plan, medication history and key professional contacts. This has been developed by the Royal College of Paediatrics and Child Health (RCPCH) with input from key epilepsy professionals, parents, children and young people and funded by the Healthcare Quality Improvement Partnership (HQIP). The aim is to help children and young people with epilepsy and their families communicate with healthcare and other professionals and to help healthcare professionals communicate with each other.

·  Epilepsy Society

A large epilepsy charity producing a wide range of resources and medical information - users need to register to obtain password to log on to professional sections.

·  European Declaration on the Health of Children and Young People with Intellectual Disabilities and their Families

A new landmark European declaration "Better health better lives: children and young people with intellectual disabilities and their families" was signed on 26th November 2010. This initiative, led by WHO in partnership with Unicef, aims to ensure that all children and young people with learning disabilities are fully participating members of society, living with their families, integrated in the community and receiving health care and support proportional to their needs.

·  FAS Aware (Foetal Alcohol Syndrome)

FASAWARE is one of three UK charities dedicated to providing support and education to the general public about FAS. It has numerous resources and links to UK, international, and other sources of information.

·  FASD Trust

Organisation raising awareness of Foetal Alcohol Spectrum Disorders, with support groups throughout the UK for families caring for someone with FASD, and also providing information and training for professionals and the general public.

·  Housing & Support Alliance

The Housing & Support Alliance wants to create more choice and control for people with learning disabilities over where they live and how they are supported. It is a national charity and membership organisation working with people with learning disabilities, families, advocacy organisations, housing and support providers and commissioners.

·  Improving Health and Lives: Learning Disabilities Observatory

The Observatory aims to provide better, easier to understand, information on the health and wellbeing of people with learning disabilities, which should help hospitals and other providers of health and social care, and their families and carers, in order to ensure the best possible outcomes for the health and lives of people with learning disabilities.

·  Learning Development Aids (LDA)

LDA specialises in educational resources to support your children, as well as teachers and all of your pupils, particularly if they have special educational needs. They have resources which cover Dyslexia, Dyspraxia, Autism, ADHD, Dyscalculia, Handwriting and Fine Motor Skills, Gross Motor Skills and General Educational Needs.

·  Mencap

Mencap is a UK charity working with and for people with a learning disability and their parents and carers. The helpline offers free, confidential and independent information and advice on virtually any subject to do with learning disability. Mencap has a lot of local knowledge, and a network of connections nationwide. This means that they can link you up with organisations or services in your area that can help. They also run an information and advice helpline on 0808 808 1111.

·  Mental Health Foundation

We are committed to reducing the suffering caused by mental ill health and to help everyone lead mentally healthier lives.

·  National Autistic Society (NAS)

NAS is the largest UK charity working for people with Autism. They provide information, support and pioneering services, and campaign for a better world for people with autism.

·  Norah Fry Research Centre

Norah Fry is one of the leading centres in the United Kingdom for research into services for people with learning disabilities. Research studies at the Centre are based on a social model of disability, attempting to support disabled people and their families in identifying and tackling the barriers they face.


National Society for the Prevention of Cruelty to Children is a national UK charity working to protect children from abuse. Information and resources can be found on their website.

·  Ouch!

The BBC's disability website.

·  Palliative Care for People with Learning Disabilities

Network which brings together service providers and carers working for the benefit of people with learning disabilities who have palliative care needs, based on the belief that these people should receive all the co-ordinated help they need until the end of their lives.

·  RD4U (Road For You)

RD4U is Cruse Bereavement Care's Young People's Website which is designed for young people by young people, and provides support to people after the death of someone close. It has a (monitored) message board and other youthful therapeutic activities, and an email support service manned by trained young volunteers. The upper age limit for users of the site is 25 years old.

·  Respond

Respond provides a range of services to both victims and perpetrators of sexual abuse who have learning disabilities and those who have been affected by other trauma. Services include support and training for families, carers and professionals.

·  Royal College of Psychiatrists

Clicking on the publications page of this site leads you to books, fact sheets and leaflets.

·  Royal National Institute for the Blind (RNIB)

The RNIB site contains information on common eye conditions; practical help with everyday living at home, work and school; information about how sight problems affect the population, and accessible materials and links to resources in your area.

·  The Big Tree

The Big Tree is a way into the internet about important things for people with a learning disability. It is like a very big library or place to find information. You can also find other people who are interested in the same things as you. The aim is to make it easy for people with a learning disability to use.

·  The Challenging Behaviour Foundation

The Challenging Behaviour Foundation offers a wide range of information sheets about challenging behaviour and related topics.

·  The Foundation for People with Learning Disabilities

This is a site is run by the Foundation for People with Learning Disabilities, the leading UK charity researching learning disability issues. The site features the latest news and events on learning disability issues, as well as information on topics such as advocacy, accommodation and employment.

·  The Fragile X Society

A website containing information on Fragile X syndrome, its causes, its effect on families, and information on the Fragile X Society.

·  The Prader-Willi Syndrome Association UK

The PWSA (UK) is the only organisation in the UK and the Republic of Ireland to address the unique needs of people with PWS, their parents, carers, enablers, and professionals from health, education and social services who work with them.

·  The Rosetta Foundation

The Rosetta Foundation is a non-profit organisation registered in Ireland working to provide equal access to information and knowledge across the languages of the world. It maintains the Translation Commons (www.trommons.org) matching non-profit translation projects and organisations with the skills and interests of volunteer translators across the world.

·  The Tuberous Sclerosis Association

Website of the Tuberous Sclerosis Association, a UK charity that supports sufferers, promotes awareness, and seeks the causes and best possible management of Tuberous Sclerosis (TSC).

·  Understanding Intellectual Disability & Health

An understanding of the nature of intellectual disability is essential for health care professionals, who are required to support equal access to their services for all disabled people. This site is an ideal learning resource for anyone working in healthcare.

·  Unique

Unique is a source of information and support for families of children with rare chromosome disorders.

·  Victim Support

Victim Support is the national service for crime victims, witnesses, their families and friends. A range of services is offered by Victim Support, whether or not a crime has been reported. Victim Support provides information, practical help and emotional support to people who have experienced a crime, and to their families and friends.

·  WELD blog – Working with Evidence about Learning Disabilities

A free web resource for health and social care professionals who work with people with learning disabilities. Blog posts summarise good quality published evidence such as policy guidance, reports and primary research and commentary from respected experts in the field.

·  Williams Syndrome Foundation

This website contains information on Williams Syndrome for parents, and also more in-depth medical information.

·  When Owl Had Cancer

My humble Owl has been waiting patiently in the wings of this blog, clutching a stack of stories. He kept being upstaged by more pressing matters. Test results, funerals, that kind of thing. Experiences of a breast cancer patient. By Irene Tuffrey-Wijne