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.
Advances in Psychiatric Treatment – Advances in Psychiatric Treatment is aimed at practising mental health professionals who need to be kept informed of current ideas, techniques and developments in psychiatry. Each issue includes commissioned articles dealing with physical and biological aspects of treatment, psychological and sociological interventions, management issues and treatments specific to the different psychiatric sub-specialities.
American Association on Intellectual and Developmental Disabilities – On-line resource which aims to augment AAIDD's activities and give rapid access to information about the intellectual and developmental disabilities field.
Angelman Syndrome Support Education and Research Trust (ASSERT) – Charity which supports families and carers of people with Angelman Syndrome, provides education and raises awareness of this rare neurological condition and the issues that surround it, and assists organizations and individuals in carrying out research into Angelman Syndrome and its many related areas.
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.
https://www.rcgp.org.uk/clinical-and-research/resources/toolkits/health-check-toolkit.aspx - Step-by-step toolkit for Annual Health Checks for people with learning disabilities, developed in partnership with the Clinical Innovation And Research Centre at the Royal College of GPs, for use by GPs, practice nurses and the primary administration team.
Benefits: Useful Information – London Advice Services Alliance
Benefits: Useful Information – Community Legal Services Direct
Benefits: Useful Information – Department for Work and Pensions
Benefits: Useful Information – Benefits and Work - Guides You Can Trust
Books Beyond Words – Books Beyond Words tell stories in pictures to help people with learning and communication difficulties explore their own experiences.
British Institute of Learning Disabilities – BILD is the British Institute of Learning Disabilities, a not-for-profit organisation with charitable status, which exists to improve the quality of life of all people with a learning disability. The site provides information, publications and training and consultancy services for organisations and individuals.
British National Formulary – Website providing UK healthcare professionals with authoritative and practical information on the selection and clinical use of medicines in a clear, concise and accessible manner.
Cambridge Intellectual & Development Disabilities Research Group – The Group undertakes research in the field of intellectual and other developmental disabilities that will inform the treatment and support of people with disabilities themselves and also relevant policy and practice.
The Choice Forum – The Choice Forum is an online discussion forum on issues in the lives of people with learning disabilities in the UK. It brings together people working with people with learning disabilities, national and local policy makers, service providers and purchasers, parents, carers and people with learning disabilities. It is a forum where you can ask questions, find answers, and share ideas with others with similar interests.
CIPOLD Confidential inquiry into the premature deaths of people with learning disabilities – This includes the interim report on the process and outcomes of the Confidential Inquiry, highlighting factors that have been identified as being relevant to the deaths of people with learning disabilities, and recommendations/learning points regarding the care/support of people with learning disabilities.
Contact a Family – Directory of the organisations in the UK who provide family support (and often very useful medical information for professionals) on a wide range of syndromes including rare conditions.
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 (tel +44 (0)845 7585 565).
Down's Heart Group – The Down's Heart Group is a UK charity which offers support and information to families who have a member with Down's Syndrome and congenital heart defects. The site contains information about heart defects, tests and procedures, and other topics of interest, as well as details of the support and information available from the Down's Heart Group.
Down's Syndrome Association UK – Large website that also contains a lot of downloadable medical information on Down's Syndrome and useful links.
Down's Syndrome Medical Interest Group – This site provides essential information for healthcare professionals on 'best practice' medical care for people with Down's syndrome in the UK and Ireland. It has been produced by the UK Down's Syndrome Medical Interest Group (DSMIG), a network of doctors whose aim is to ensure equitable provision of medical care for all people with Down's syndrome in the UK and Republic of Ireland.
Down's Syndrome Scotland (formerly Scottish Down's Syndrome Association) – The website of Down's Syndrome Scotland, formerly known as Scottish Down's Syndrome Association. The site provides a source of information and news on the organisation's current activities throughout Scotland.
Dr. Alper – Site for Medical Professionals that includes many useful links.
Easyhealth – 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.https://www.easyhealth.org.uk
e-Learning for General Practice – Online e-learning resource for NHS General Practitioners and doctors undertaking specialty training for UK general practice, jointly developed by the Royal College of General Practitioners and e-Learning for Healthcare, and including a module on learning disabilities.
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.
Estia Centre – The Estia Centre is a training, research and development resource for those who support adults with learning disabilities and additional mental health needs, based at Guy’s Hospital, London.
European Association of Intellectual Disability Medicine – MAMH is an organisation of European doctors working within different specialties who are committed to high quality medical care for people with learning disabilities. It aims to bring together knowledge of service provision, medical education, research and evidence based medical care from Europe and the rest of the world and to eventually establish 'Intellectual Disability Medicine' as a specialty in all European countries.
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.
https://www.learningdisabilities.org.uk - 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 site containing information on Fragile X syndrome, its causes, its effect on families, and information on the Fragile X Society.
GMC Learning Disabilities – Resource for doctors, medical students and other healthcare workers to learn some small changes they can make to their practice which can have a big impact on the standard of care they provide for their patients with learning disabilities.
http://www.gmc-uk.org/guidance/ethical_guidance/consent_guidance_index.asp - Consent: patients and doctors making decisions together. This guidance for doctors sets out the principles on which good clinical decisions should be based.
Generate - https://generate-uk.org Generate’s mission is to create better days and better lives for people with a learning disability by working together with them and the people who know them well.
Healthcare for all: report of the independent inquiry into access to healthcare for people with learning disabilities – The independent inquiry into access to healthcare for people with learning disabilities, was chaired by Sir Jonathan Michael. The report was published by the Department of Health in July 2008
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.
Institute of Psychotherapy and Disability – The IPD exists as an organisation to develop, accredit and regulate psychotherapists who work with people with disabilities
International Association for the Scientific Study of Intellectual Disabilities – The International Association for the Scientific Study of Intellectual Disabilities is an international and interdisciplinary scientific organization that promotes worldwide research and exchange of information on intellectual disabilities.
Learning (Intellectual) Disability and Dementia – Website for those interested in finding out more about dementia in people with a learning disability, providing access to further information and training.
Mencap – Mencap is the voice of learning disability. It is a UK charity working with and for people with a learning disability and their parents and carers. Their helpline, 0808 808 1111, offers free, confidential and independent information and advice on virtually any subject to do with learning disability. Mencap has local knowledge, as well as a network of connections nationwide.
The National Association for the Dually Diagnosed – NADD is a not-for-profit membership association established for professionals, care providers and families to promote understanding of and services for individuals who have developmental disabilities and mental health needs.
National Autistic Society – Largest UK charity working for people with Autism. Useful list of publications, information and links to autism sites.
National Electronic Library for Health – The aim of this site is to provide access to best current knowledge in relation to the development and delivery of services for people with a learning disability.
National Institute for Health and Care Excellence – Prevention, assessment and management of mental health problems in people with learning disabilities
A National Response to the Abuse of People with Learning Disabilities – Department of Health documents concerning the events at Winterbourne View hospital and a programme of action to transform services, published in March 2013.
Norah Fry Research Centre – Research on services for people with learning disabilities.
OMIM - Online Mendelian Inheritance in Man – This database is a catalog of human genes and genetic disorders with up-to-date medical reviews of each. The database contains textual information, picture and reference information.
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.
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 Prader-Willi Syndrome Association USA – Prader-Willi Syndrome Association (USA) is dedicated to serving individuals affected by Prader-Willi Syndrome (PWS), their families, and interested professionals and aims to provide education, and support services to its members.
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.
http://radiant.nhs.uk - RADiANT is a consortium of NHS service providers working in collaboration with university academics. It seeks advice from service users, patients, families, charities, community leaders, and a range of statutory bodies and organisations. It focuses on mental health and behavioural issues associated with five developmental conditions - Intellectual Disability; Autistic Spectrum Disorders; Attention Deficit Hyperactivity Disorder; Epilepsy; and Acquired Brain Injury.
RD4U – (Road For You/Hope Again) is Cruse Bereavement Care's Young People's website which is designed for young people (under 25) 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.
Royal College of Psychiatrists – Clicking on the publications page of this site leads you to fact-sheets and leaflets. Books Beyond Words (as featured in 'Learning about Intellectual Disabilities and Health') can be ordered via this website.
The Royal Society of Medicine is one of the country's major providers of postgraduate medical education. Independent and apolitical, the Society provides a neutral platform for informed debate about important, often controversial, healthcare topics. Their mission is to advance health through education and innovation.
Royal National Institute of Blind People – 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.
Action on Hearing Loss (Royal National Institute for Deaf People) – Detailed website containing information for deaf people on services, support and resources.
'Six Lives' progress report – The Department of Health published a report in October 2010 on progress to improve healthcare for people with learning disabilities, in line with the recommendation of the Parliamentary and Health Service Ombudsman and Local Government Ombudsman in their March 2009 investigation ‘Six Lives’.
Special Olympics GB – SOGB is the country’s largest provider of year-round sports training and competition programmes for all children and adults with learning disabilities.
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).
Unique – Unique is a source of information and support for families of children with rare chromosome disorders.
United Response – United Response is a national charity that supports people with learning disabilities, mental health needs and physical disabilities to take control of their lives.
University of Hertfordshire, Centre for Learning Disability Studies – Centre whose main aim is to ensure that all its work with students and partners is relevant to the lives of people with learning disabilities.
UN Convention on the Rights of Persons with Disabilities (CRPD) https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html - The Convention adopts a broad categorization of persons with disabilities and reaffirms that all persons with all types of disabilities must enjoy all human rights and fundamental freedoms.
V, W, X, Y and Z
Williams Syndrome Foundation – Contains information on Williams Syndrome for parents, and also more in-depth medical information.
3DN: Intellectual Disability and Mental Health e-Learning – Freely accessible and interactive e-learning portal for intellectual disability and mental health. It houses modules for health and disability professionals, carers and consumers, each of which is independently reviewed prior to launch. The site aims to improve the mental health and wellbeing of people with an intellectual disability by providing e-learning to professionals, carers and consumers.