Action for Dystonia, Diagnosis, Education & Research (ADDER) A.D.D.E.R. was formed in 1999 out of the North East branch of The Dystonia Society, which had been running since it was started ten years previously. The name A.D.D.E.R., which stands for Action for Dystonia, Diagnosis, Education and Research, was dreamt up by John Whitaker, our own Outreach Dystonia Nurse Practitioner, because A.D.D.E.R. is a snake which suddenly strikes out of the blue, which is a bit like dystonia. One minute you are fine and the next you have this irritating and annoying muscle spasm, in your neck or face or wherever, which will not go away. Dystonia is a rare neurological movement disorder which causes involuntary and prolonged muscle contractions. Dystonia can appear in any muscle group in the body and can be extremely painful and debilitating. [United Kingdom]
Dystonia Medical Research Foundation (DMRF) Since 1976, the DMRF has grown from a small family-based foundation into a dynamic membership-driven organization led by a Board of Directors and network of volunteers with personal connections to dystonia. Because dystonia hits so close to home for our directors and volunteers, the DMRF leadership is motivated by an unrelenting drive to find a cure and an unwavering commitment to serving people affected by dystonia.
MedlinePlus: Dystonia MedlinePlus is a service of the U.S. National Library of Medicine (NLM), National Institutes of Health (NIH). Dystonia is a movement disorder that causes involuntary contractions of your muscles. These contractions result in twisting and repetitive movements. Sometimes they are painful. Dystonia can affect just one muscle, a group of muscles or all of your muscles. Symptoms can include tremors, voice problems or a dragging foot. Symptoms often start in childhood. They can also start in the late teens or early adulthood. Some cases worsen over time. Others are mild.
National Spasmodic Torticollis Association Inc. (NSTA) The mission of the National Spasmodic Torticollis Association is to support the needs and well being of affected individuals and families; to promote awareness and education; to advance research for more treatments and ultimately a cure.
Spasmodic Torticollis / Dystonia Inc. ST/Dystonia was incorporated in 1989, becoming a non-profit 501(c) 3 organization in 1990 and has been dedicated to helping people with Spasmodic Torticollis (ST) ever since. In this site, you will find the testimonials of others who have been helped; you will find the many benefits we offer you; you will find our “Treatment Center” offering you the major treatments available for you. Just a few years ago not much was available. The advances have been fairly dramatic, however, in what can help you today. It's no longer just oral meds but there is now botox, myobloc, the Selective Denervation Surgery and, coming along fast, the Deep Brain Stimulation (DBS) Operation. And we're here to help advise you of these various treatments.
Spasmodic Torticollis Recovery Clinic, Inc. S.T.R.C. provides natural, non-medical, individualized education and therapy for people suffering with Spasmodic Torticollis/Cervical Dystonia globally (ST/CD).
The Dystonia Society The Dystonia Society was established in 1983 by a small group of people affected by dystonia, with the support of the late Professor David Marsden. The Society was established to promote the welfare of people who are affected by any form of the neurological movement disorder known as dystonia. The Society aims to do this by promoting awareness of the disorder, by supporting research and by undertaking welfare initiatives. It does this on a national level and through its network of local support groups. [United Kingdom]
Ability Needs magazine for the less able and their carers made available within special needs groups, nursing homes and NHS Trusts throughout the United Kingdom in addition to being distributed to disabled people and NHS and Social Services Occupational Therapists free of charge through our extensive mobility mailing information. And is on sale nationally; additional copies of Ability Needs Magazine are also available at Shopmobility outlets throughout the UK.
Action for Blind People merged with RNIB On 1 April 2017, Action for Blind People merged with RNIB. This allows them to help more blind and partially sighted people by combining their services, knowledge, and expertise within one charity.
Action on Hearing Loss – formerly the Royal National Institute of the Deaf (RNID) – the largest charity representing the 9 million deaf and hard of hearing people in the UK.
Autochair (wheelchair and scooter carriers). AutoChair designs and manufactures hoists and other aids to assist people with disabilities and reduced mobility to get into their car or van.
British Telecommunications (BT) Including You – Understanding Impairments Information for BT users who need help for Hearing, Sight, Speech & language, Mobility Dexterity, Understanding & using technology. If you or someone you know has an impairment, discover more about the impact it can have on day-to-day life, and how BT can help. We want to make sure our products and services are available to everyone – whatever their need. That’s why we have made this website – and all our products and services – as accessible as possible, so they’re easy to use. Find out about our commitment to you – and about our work with other organisations.
British Standard 8878 (BS 8878) is a Web Accessibility Code of Practice which was published by the British Standards Institute (BSI). BS 8878 is part of the UK government’s broader self-regulatory approach to standardization. The standard was officially launched on 7 December 2010. BS 8878 defines a process for creating and embedding a web accessibility strategy within an organisation. It is written in non technical language and is aimed at people within an organisation who have responsibilities for web strategy or development. It encompasses web sites, web applications, software as a service, cloud based services and other services accessed via a web browser. BS 8878 is not intended as a competitor or alternative to the WCAG standard developed by W3C WAI. Rather, it defines the processes needed in the planning and deployment of accessible web products. This can include the selection of WCAG guidelines.
BSI Website accessibility for all (.pdf) is a consumer's guide to the British Standard for Web Accessibility (BS 8878)
Citizens Online is a national charity that was set up to tackle the issues of digital exclusion, to make sure that the Internet is available to everybody and to help individuals and communities understand and gain the benefits of being online.
Disability Arts International is a website and regular digital newsletter developed and coordinated by the British Council, the UK's international organisation for cultural relations and educational opportunities It aims to promote the work of the unique generation of excellent disabled artists, disabled-led companies and inclusive arts organisations. The website aims to share the ways arts organisations are increasing access to the arts for disabled people as audiences and visitors. DisabilityArtsInternational.org also seeks to explore and contrast different cultural policy and funding environments. New
Disability Equality Scotland seeks to promote independent living, removing barriers to inequality for those affected by disability in Scotland. [Scotland]
Disabled Holidays travel without limits. Holidays for people with disabilities including wheelchair accessible visitor attractions, activities, and accommodations
Disabled Access Holidays is an online travel agent offering services to disabled people throughout the UK. It provide financial protection through its membership of the award winning Global Travel Group on all wheelchair accessible holidays abroad. Disabled Access Holidays Ltd and its sister company Mobility Equipment Hire Direct Ltd offer wheelchair accessible accommodation, mobility equipment hire, wheelchair adapted taxi transfers and wheelchair assistance on flights to destinations throughout the world.
Disability news and blogs by the BBC:
The very best of the BBC's stories and analysis about disability and mental health can be found on the Disability News Index page.
The BBC "Ouch" blog is no longer being updated as of February 2017. The Ouch Team moved all their best features, videos, and audio to the BBC Ouch programmes page: Ouch! Disability Talk
Although they are no longer updating the blog, you might want to scroll through it anyway as there are some great posts which might be of interest: "Ouch" blog archives.
Disabled People the merger of disability.gov.uk and the "disabled people" section of Directgov. Directgov offers disabled people information on a wide range of topics including financial support, home and housing, leisure and travel, as well as disability rights information.
Disability Rights Commission Formal Investigation Report: Web Accessibility (April 14th, 2004). The report is called "The Web: Access and Inclusion for Disabled People" (.pdf). There is a PDF of the full report, an "easy read" version in PDF format, an RTF version, and a Welsh or Cymru version in RTF.
Food Allergy UK Natural Common Allergens, Chemical Allergens, E-Numbers and Food Additives [United Kingdom] Updated
Genetic Alliance UK is the national charity working to improve the lives of patients and families affected by all types of genetic conditions. We are an alliance of over 160 patient organisations.
Guide Dogs The Guide Dogs for the Blind Association
Inclusion International promoting inclusion, equality and opportunity for people with intellectual disabilities and their families worldwide. [United Kingdom]
Leonard Cheshire Disability – the leading charity provider of services for disabled people in the UK and operate in 57 countries across the world
MENCAP "Understanding learning disability" Mencap can help you make your information easy to understand for people with a learning disability. Or, if you have a learning disability, you might like to see their easy to read web pages and publications.
Maternal Mental Health Alliance (MMHA) is a charity and coalition of UK organisations with a vision to see all women across the UK get consistent, accessible and quality care and support for their mental health during pregnancy and in the year after giving birth.
Open University Services for Disabled Students resources for students, including good guidance on thinking about their needs, legal advice, course materials in alternate formats, and more.
REMAP provides one-off technical aids which help disabled people of all ages to enjoy a better lifestyle. Every aid is given free of charge to the user. Remap operates through a network of 1,500 volunteers. The professional engineers, technicians, and craftspeople – along with medical and paramedical staff from community services and hospitals – all belong to approximately 100 panels (groups) linked to regions across the UK, with Scotland and the Isle of Man operating separately.
REMAP Scotland consists of engineers, occupational and physiotherapists, and other professionals engaged in helping people with their disabilities. Objective: "The design and construction of appliances to meet the individual needs of handicapped people where such cannot be provided by any other means, and the promotion of closer liaison between the Engineering and Caring professions." Members are volunteers and rely on donations of materials and funds from the general public. No charges are made to clients for the devices supplied. [Scotland]
Disability Information Scotland is a national project that provides reliable, accurate, and accessible information for people living with disability in Scotland. They offer several free online certificate courses designed to improve your general knowledge and understanding of accessible Information.They also provide excellent Training Resources & Publications [Scotland] New
Skill: National Bureau for Students With Disabilities is a national charity promoting opportunities for young people and adults with any kind of disability in post-16 education, training and employment across the UK.
Sportability (taking the ‘did’ out of disability) is a British charity that provides sporting and adventurous activities for people with all forms of paralysis. Their motto is "If I can do this, what else can I achieve." [Note: the side navigation in this site doesn’t work well in Firefox on the Mac so you will need to View Source to get at the side navigation links.]
Technology guides: Staying in Touch – a guide that contains information about accessible mobile phones and software applications for blind and partially sighted people that are available from RNIB and other suppliers. [United Kingdom / Spain]
UK debut for ‘blind’ mobile by Geoff Adams-Spink. The first mobile phone designed specifically for blind and partially sighted people.BBC News, 23 November 2003
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