Organizations Part 2

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Hearing Impairment

Hearing Loss Association of America (HLAA)

The Hearing Loss Association of America (HLAA) is the nation’s leading organisation representing people with hearing loss. HLAA provides assistance and resources for people with hearing loss and their families to learn how to adjust to living with hearing loss. HLAA is working to eradicate the stigma associated with hearing loss and raise public awareness about the need for prevention, treatment, and regular hearing screenings throughout life.

National Association of the Deaf (NAD)

The National Association of the Deaf (NAD) is the nation's premier civil rights organisation of, by and for deaf and hard of hearing individuals in the United States of America. Established in 1880, the NAD was shaped by deaf leaders who believed in the right of the American deaf community to use sign language, to congregate on issues important to them, and to have its interests represented at the national level. These beliefs remain true to this day, with American Sign Language as a core value.

World Federation of the Deaf (WFD)

The World Federation of the Deaf (WFD) is an international non-governmental organisation representing approximately 70 million Deaf people worldwide. Most important among WFD priorities are Deaf people in developing countries; the right to sign language; and equal opportunity in all spheres of life, including access to education and information.

British Deaf Association (BDA)

The British Deaf Association is the largest Deaf-led organisation in the UK. They represent the British Sign Language community, which is united by shared experiences, history and, most importantly, by language. As a member-led organisation their work is focused on achieving equality for Deaf people through campaigning and community engagement. Working with local Deaf Communities is crucial to the success of BDA campaigns and creates opportunities for Deaf people to develop and engage with each other and the wider community.

European Union of the Deaf (EUD)

Based in Brussels, Belgium it is a not-profit European non-Governmental organisation (ENGO) comprising National Associations of the Deaf (NADs). It is the only supranational organisation representig Deaf people at European level and is one of the few ENGOs representing associations in all 27 EU Member States, including Iceland, Norway and Switzerland. Aiming to establish and maintain EU level dialogue with the European Union institutions and officials in consultation and co-operation with its member NADs, it also has participatory status with the Council of Europe (CoE).

Guide for students with hearing impairments

Deaf or hard of hearing students face a host of unique challenges in the classroom and on campus. This guide highlights those struggles as well as provides helpful advice and showcases resources which may aid the student. Some key elements of the guide include: Tech tools for students with hearing impairments, How schools create more audible environments, Scholarships for students with hearing impairments.

The Listen Foundation

The Listen Foundation is committed to helping infants and children who are deaf or hard of hearing learn to listen and talk so that they may have the same opportunities as other children, regardless of their ability to pay.

Better Hearing Institute (BHI)

The Better Hearing Institute (BHI) is a not-for-profit corporation that educates the public about the neglected problem of hearing loss and what can be done about it. Founded in 1973, they are working to erase the stigma and end the embarrassment that prevents millions of people from seeking help for hearing loss. The BHI wants to show the negative consequences of untreated hearing loss for millions of Americans. And they want to promote treatment and demonstrate that this is a national problem that can be solved.

International Hearing Society (IHS)

The International Hearing Society (IHS) is a membership association that represents hearing healthcare professionals worldwide. IHS members are engaged in the practice of testing human hearing and selecting, fitting and dispensing hearing instruments and counseling patients. Founded in 1951, the Society continues to recognise the need for promoting and maintaining the highest possible standards for its members in the best interests of the hearing impaired it serves.

Deaf Academics

Deaf academics are Deaf/deaf or hard-of-hearing individuals who are scientists, researchers, instructors, professors, or lecturers within an university or laboratory setting. It is an international community, and the members represent a diverse range of fields of study. The mission of the Deaf Academics organisation is to foster interaction between Deaf and hard-of-hearing people in academic or research careers.

Trisomy 21 (Down Syndrome)

World Down Syndrome Day

21 March 2012 marks the 7th anniversary of World Down Syndrome Day and for the first time in 2012 this day will be officially observed by the United Nations. Each year the voice of people with Down syndrome, and those who live and work with them, grows louder. For 2012, this website has been re-launched with new features and you are now able to register and share details of your activities and events with the global community.

European Down Syndrome Association (EDSA)

The European Down Syndrome Association (EDSA) is a non-profit organisation supporting and representing people with Down syndrome across Europe. EDSA brings together organisations from across Europe, sharing information and promoting collaboration to improve life for people with Down syndrome and their families.

Down Syndrome Research Foundation

The Down Syndrome Research Foundation initiates and participates in research that provides insight into the unique learning style of people with Down Syndrome. The data collected is analysed and pilot interventions and educational programs are developed and offered. These programs test the understanding of the brain and are evaluated to observe the impact on our students. Even the slightest increase in cognitive ability can make a significant difference in the level of support an individual with a developmental disability may require.

National Down Syndrome Congress (NDSC)

The NDSC works to empower its members and all people with Down syndrome by creating a national climate in which all people will recognise and embrace the value and dignity of people with Down syndrome. The NDSC annual convention provides an intense educational and networking experience for all attending.

National Down Syndrome Society (NDSS)

The mission of the National Down Syndrome Society is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome. Their activities include improving educational opportunities for individuals with Down syndrome, advancing basic, clinical and applied research and implementing a national public awareness strategy.

International Mosaic Down Syndrome Association (IMDSA)

As an all volunteer based organisation it is the mission of the International Mosaic Down Syndrome Association to support any family or individual whose life has been affected by Mosaic Down Syndrome by continuously research opportunities and increasing awareness in the medical, educational, and public communities throughout the world.

Down Syndrome Society of South Australia Inc. (DSSSA)

The DSSSA wants to advocate for the rights, interests and welfare of people with Down syndrome or other similar chromosomal disorders. The mission of the DSSSA is to promote and/or provide specific programs, services and resources which improve their health and well-being, education, personal development, employment opportunities, and recreational and lifestyle options.

Down's Heart Group

The Down's Heart Group is a charity offering support and information relating to heart conditions associated with Down's Syndrome. The aim of this website is to provide non-medical people in the UK with good quality information about the heart conditions associated with Down’s Syndrome and other related topics.

Down Syndrome International (DSi)

Down Syndrome International is a UK based international charity, comprising a membership of individuals and organisations from all over the world, committed to ensuring quality of life and human rights for all people with Down syndrome. Its members include people with Down syndrome, parents, family members and friends, carers, professionals, practitioners, researchers, organisations and people who are just interested in Down syndrome.

Down TV

Down TV is an interactive video sharing website that pretends to cover a wide selection of themes all related to Trisomy 21 or Down’s Syndrome. The result is a wide range of videos that try to answer most of the questions people have on Down’s Syndrome.

Down Syndrome Health Issues

The mission of this website is to promote the health of children with Down syndrome and to empower parents of children with Down syndrome with knowledge about the condition. This goal is to be achieved by providing information to readers in the form of essays about Down syndrome, reviews of scientific research about Down syndrome, and other important information such as internet sites and books.

The Down's Syndrome Medical Interest Group (DSMIG)

DSMIG was launched in 1996 and is a registered charity. It is a network of healthcare professionals – mainly doctors - from the UK and Republic of Ireland whose aim is to share and disseminate information about the medical aspects of Down’s syndrome and to promote interest in the specialist management of the syndrome.

Mosaic Down Syndrome UK

The website of Mosaic Down Syndrome UK has been set up as a support tool for parents of children with Mosaic Down Syndrome (MDS). The e-mail group encourages parents to mail their concerns or problems to the group, where other parents can provide answers they may not be able to get anywhere else.

Down Syndrome Education (DSE) International

Down Syndrome Education International is a leading international charity dedicated to raising levels of educational achievement among children with Down syndrome. They focus on delivering measurable improvements in speech and language, reading and literacy, and number and maths skills, memory and cognition, social development and educational attainment.

Alzheimer Disease

Alzheimer's Association

The Alzheimer's Association is the leading, global voluntary health organisation in Alzheimer's care and support, and the largest private, nonprofit funder of Alzheimer's research. It works on a global, national and local level to enhance care and support for all those affected by Alzheimer’s and related dementias.

Alzheimer's Disease Education and Referral Center

The U.S. Congress created the Alzheimer's Disease Education and Referral (ADEAR) Center in 1990 to "compile, archive, and disseminate information concerning Alzheimer's disease" for health professionals, people with AD and their families, and the public. The ADEAR Center is a service of the National Institute on Aging (NIA), one of the Federal Government's National Institutes of Health and part of the U.S. Department of Health and Human Services. The NIA conducts and supports research about health issues for older people, and is the primary Federal agency for Alzheimer's disease research.

Alzheimer Research Forum

The web site reports on the latest scientific findings, from basic research to clinical trials; creates and maintains public databases of essential research data and reagents, and produces discussion forums to promote debate, speed the dissemination of new ideas, and break down barriers across the numerous disciplines that can contribute to the global effort to cure Alzheimer's disease.

Mutation Database

The Alzheimer Disease & Frontotemporal Dementia Mutation Database (AD&FTDMDB) aims at collecting all known mutations in the genes related to Alzheimer disease and frontotemporal dementias.

Alzheimer’s Disease International

Alzheimer’s Disease International is an international federation of more than 75 Alzheimer associations. Representing people and nations on all continents, the organisation has become the Global Voice on Dementia. ADI works locally, by empowering national Alzheimer associations to promote and offer care and support for people with dementia and their carers, whilst working globally to focus attention on the epidemic and campaign for policy change from governments and the World Health Organisation.

American Health Assistance Foundation

The American Health Assistance Foundation seeks to eradicate age-related degenerative diseases by: advancing research seeking causes, prevention, treatment, and cures; promoting positive behaviors to combat these diseases; and facilitating the public's efforts to assist those who are affected. AHAF has been designated a nonprofit organisation.

Alzheimer’s Research UK

Alzheimer’s Research UK is the UK’s leading dementia research charity specialising in finding preventions, causes, treatments and a cure for dementia.

Alzheimer Society of Ireland

The Society was founded in 1982 by a small group of people who were caring for a family member with Alzheimer's Disease or a related dementia. Today, it is a national voluntary organisation with an extensive national network of branches, regional offices and services that aims to provide people with all forms of dementia, their families and carers with the necessary support to maximise their quality of life.

The Scottish Dementia Clinical Research Network (SDCRN)

The Scottish Dementia Clinical Research Network has been set up with the intention of spreading a culture of clinical research in dementia across Scotland and improving recruitment from both urban and rural areas.


Spinal Injuries Association (SIA)

The Spinal Injuries Association is the leading national charity for spinal cord injured people. SIAs aims are to offer support and assistance from the time of injury and for the rest of a paralysed person's life, to provide services to increase an individual's quality of life, support the families of newly injured people, to increase knowledge and awareness of the causes and consequences of spinal cord injury, to campaign for the best medical and social care for spinal cord injured people. Online there is a message board, a chat and the National Library on Spinal Cord Injury, a unique reference collection with online catalogue.

Association for Spinal Injury Research (ASPIRE)

ASPIRE is a registered charity formed in 1983 for rehabilitation and reintegration, and works with people who are spinally injured to promote well-being and independence. Through its projects and programmes, Aspire offers practical support to the 40,000 people living with a spinal cord injury in the UK so that they can lead fulfilled and independent lives in their homes, with their families, in work places and in leisure time.

The Back-Up Trust

A national charity offering people paralysed through spinal cord injury the opportunity to take up challenging outdoor activities: which act as a catalyst in regaining confidence, independence and motivation. Back-Up is for everyone affected by spinal cord injury, regardless of age, level of injury, or background. Back-Up is there for family members, too. Their services include mentoring, wheelchair skills training and activity courses as well as support in getting back to work or school after an injury.

European Spinal Cord Injury Federation (ESCIF)

The European Spinal Cord Injury Federation has 25 members. All members of ESCIF are independent national organisations with their own statutes and whose main objective is to represent people with spinal cord injury in their country.

British Association of Spinal Cord Injury Specialists (BASCIS)

The British Association of Spinal Cord Injury Specialists is made up of senior doctors in Great Britain, Northern Ireland and Eire. They aim to improve the acute and long-term management of spinal cord injury and the training of doctors in the speciality. The following web site will give you the contact names of the leading consultants in each of the Spinal Injury Units in Britain and Ireland. BASCIS works to improve the quality of care for Spinal Cord Injury patients and the training of doctors in the speciality.

International Spinal Cord Society (ISCoS)

The International Spinal Cord Society is a membership organisation of over 1,000 clinicians and scientists from 87 countries. They regularly update their knowledge at the Annual Scientific Meeting held in a different country each year. They aim to promote the highest standard of care in the practice of spinal cord injury for men, women and children throughout the world and endeavour to foster education, research and clinical excellence. Spinal Cord, their official journal, is essential reading for those working full time in spinal cord injuries and those who have a special interest in basic science and any of the of the organs or systems affected by spinal cord injury.

Multidisciplinary Association of Spinal Cord Injured Professionals (MASCIP)

MASCIP is a national forum to promote standards in clinical practice, foster research and encourage service development. Open to individuals with a professional interest and activity associated with SCI. The Association's prime objective is to provide a national professional forum to promote standards in clinical practice, foster research and encourage the development of health and social care services for people with spinal cord injuries. MASCIP exists to enable all professions and grades of staff associated with the care and welfare of people with Spinal Cord injuries, both within and outside of Spinal Cord Injury Centres, to articulate professional issues and concerns.

Spinal Cord Injuries Australia

Spinal Cord Injuries Australia was formed as the Australian Quadriplegic Association in September 1967 to provide suitable accommodation for young people with severe spinal cord injuries. Their services have expanded as the need and opportunity arose. They now extend their services to all people with physical disabilities.

American Academy of Neurology (AAN)

The American Academy of Neurology, established in 1948, is an international professional association of 24,000 neurologists and neuroscience professionals dedicated to promoting the highest quality patient-centred neurologic care. The AAN is strongly committed to its mission and focuses its efforts on ensuring the reality of the principles and standards set forth in the AAN mission statement.

Spinal Research

Spinal Research is the UK’s leading charity funding medical research around the world to develop reliable treatments for paralysis caused by a broken back or neck. Spinal Research raises money to fund research into clinical treatments as well as vital basic science research.

The INSPIRE Foundation

INSPIRE is a UK national charity which was formed in 1985 by people who were themselves spinal cord injured and who wanted to raise funds for the then embryonic Medical Physics Department in Salisbury. In February 2000, INSPIRE became a member of the Association of Medical Research Charities (AMRC) and in May 2008 was awarded partnership status by the National Institute for Health Research by the Department of Health.

Spinal Injuries Scotland (SIS)

Spinal Injuries Scotland is the national voluntary organisation concerned with new and long-term spinal cord injured people, their relatives and friends, along with those involved in the management, care and rehabilitation of the injury. SIS provides immediate support through the office based Information Service and operate a self-referral information line. SIS also provides a legal and welfare rights advisory service.

Spinal Cord Injury Network (Australia, New Zealand)

Established in 2008, the Spinal Cord Injury Network has identified a number of ways to speed the translation of innovative research discoveries into practical benefits for people with spinal cord injury. They want o facilitate more effective clinical trials in spinal cord injury and also to improve translation of basic and clinical research into evidence-based practice.


Autism Radio UK

It is the first Autism Radio Station in the United Kingdom, which will broadcast local, national, and worldwide. People with Autism face lots of social barriers, so by establishing the radio station is to bring down those social barriers and improve communication across the spectrum for those with Autism & Asperger syndrome.

Autism Society

It is the home of the Autism Awareness Puzzle Ribbon, one of the most recognisable cause-related symbols, and founded National Autism Awareness Month, which helps focus attention on autism in April of every year. The Autism Society’s 170 chapters nationwide are incubators for local programs such as Safe and Sound, camps, respite care, and social skills events.


This web site provides articles, educational resources, links to local, national and international support groups, sources of professional help, lists of camps and schools, conference information, recommended reading, and moderated support message boards. The web site resources are an addition to the annual conference, newsletter email and phone support provided by MAAP Services.

World Autism Awareness Day

World Autism Awareness Day (April 2) shines a bright light on autism as a growing global health crisis. WAAD activities help to increase and develop world knowledge of the autism epidemic and impart information regarding the importance of early diagnosis and early intervention.

Irish Autism Action

Irish Autism Action is an umbrella organisation with over 40 member groups and also individual members. In April 2009 it launched the National Autism Helpline which is operated by parents. It is Ireland’s first autism helpline which provides impartial and confidential information, advice and support for people with an autistic spectrum disorder, their families and professionals.

Autism Rights Main Page

Autism Rights was established to research, lobby and campaign for the human rights of people with Autistic Spectrum Disorders (ASD) in Scotland, in particular to campaign for the provision of appropriate health treatment, education, social welfare and justice.

National Autistic Society

The society is the UK's leading charity for people affected by autism. It has 20,000 members, more than 100 branches, and provides information, advice and specialist services to 100,000 people living with autism every year.

Autism Anglia

Autism Anglia was formed following the merger of the Essex Autistic Society, Norfolk Autistic Society & NACHA (the Norfolk Autistic Community Housing Association) in 2008. It exists to 'promote the welfare, education and care' of children, young people and adults with autism and in so doing provide support and assistance to their families and carers.


Autism-Europe aisbl is an international association whose main objective is to advance the rights of persons with autism and their families and to help them improve their quality of life.


International Bureau for Epilepsy (IBE)

The IBE was established in 1961 as an organisation of laypersons and professionals interested in the medical and non-medical aspects of epilepsy. The IBE addresses such social problems as education, employment, insurance, driving licence restrictions and public awareness. To improve international understanding of epilepsy, IBE publishes a quarterly magazine, the International Epilepsy News, which keeps readers informed on international developments.

International League Against Epilepsy (ILAE)

The ILAE was founded in 1909 and is an organisation of more than 100 national chapters. The goals of the ILAE are to advance and disseminate knowledge about epilepsy, to promote research, education and training and to improve services and care for patients, especially by prevention, diagnosis and treatment.

Global Campaign Against Epilepsy

The Global Campaign Against Epilepsy was launched in 1997 with the ambitious aim to bring together three global organisations – the International League Against Epilepsy, representing medical professionals; the International Bureau for Epilepsy, on behalf of people with epilepsy and their families, non-medical professionals and the general public; and the World Health Organization, leading international public health agency – in a joint partnership to address the hidden, neglected but global problems of people with epilepsy. This objective is reflected in the Campaign title and logo "Epilepsy: Out of the Shadows".

American Epilepsy Society (AES)

The American Epilepsy Society is one of the oldest neurological professional organisations in the United States. The Society seeks to promote interdisciplinary communications, scientific investigation and exchange of clinical information about epilepsy. Membership consists of clinicians, scientists investigating basic and clinical aspects of epilepsy, and other professionals interested in seizure disorders. Members represent both pediatric and adult aspects of epilepsy.

Epilepsy Foundation of America

The Epilepsy Foundation of America is the national voluntary agency dedicated solely to the welfare of the almost 3 million people with epilepsy in the U.S. and their families. The organisation works to ensure that people with seizures are able to participate in all life experiences; to improve how people with epilepsy are perceived, accepted and valued in society; and to promote research for a cure. In addition to programmes conducted at the national level, epilepsy clients throughout the United States are served by more than 50 Epilepsy Foundation affiliates around the country.

Epilepsy Ontario (EO)

Epilepsy Ontario is a registered charitable non-profit non-governmental health organisation dedicated to promoting independence and optimal quality of life for children and adults living with seizure disorders, by promoting information, awareness, support services, advocacy, education and research.

Joint Epilepsy Council (JEC)

The Joint Epilepsy Council of the UK and Ireland (JEC) is an umbrella charity providing the representative voice working for the benefit of people affected by epilepsy. Its mission is to represent the united voice of epilepsy in the UK and Ireland and to present evidence based views on the need to for improved epilepsy services and influence decision makers in the health, social and education arenas.

Epilepsy Society

The Epilepsy Society is the leading national epilepsy medical charity and provides up to date information on all aspects of living with epilepsy, from driving, employment and pregnancy to leisure, travel and medication. The information is intended to help those affected by epilepsy make informed choices and decisions. On the website readers can find an epilepsy helpline, online epilepsy forum, epilepsy campaigns and awareness raising, epilepsy information and e-newsletters.

Epilepsy Action

Epilepsy Action is the largest member-led epilepsy organisation in Britain, acting as the voice for the UK's estimated 600,000 people with epilepsy, as well as their friends, families, carers and health professionals. As well as campaigning to improve epilepsy services and raise awareness of the condition, Epilepsy Action offers assistance to people in a number of ways including a national network of branches, accredited volunteers, regular regional conferences and freephone and email helplines.

Epilepsy Bereaved (EB)

Founded in 1993, Epilepsy Bereaved is the leading voluntary organisation in the UK and internationally working to prevent unnecessary deaths from SUDEP (Sudden Unexpected Death in Epilepsy) and other epilepsy deaths. EB is the only charity dedicated to the support and enablement of those bereaved in this way.

Young Epilepsy

Young Epilepsy campaigns for better health and education services, to raise awareness and increase understanding of epilepsy through information, support and training. Their health services provide diagnostic, assessment and rehabilitation services to children and young people in the UK and from other countries. These services along with their research programme aim to achieve valuable insights into childhood epilepsy.

Epilepsy Connections

Epilepsy Connections is a charity founded in April 2000 which provides information and support to people with epilepsy, their families, friends and those with whom they live and work.

Epilepsy Australia

Epilepsy Australia is the national coalition of Australian Epilepsy Associations. It was formed in 2000 to work with and on behalf of member associations as a national secretariat. Epilepsy Australia is a not-for-profit organisation and a nationally registered charity and is committed to improving the quality of life for every Australian living with epilepsy. Actively delivering counseling, support and information to all who access their services, Epilepsy Australia is committed to raising awareness and understanding of the very real issues faced by those living with epilepsy.