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SWAN UK
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SWAN UK offers support and information to families of children with undiagnosed genetic conditions |
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DDD Deciphering Developmental Disorders Project
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Living in the UK and your child is undiagnosed? Click here for details of the DDD project
For more information, please see www.ddduk.org or speak to your geneticist. |
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WellChild/RCN Better at Home Campaign
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Click here for more information about this campaign for better community services to allow children with long term complex health needs to be cared for in their own homes |
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Wizid Wristbands, Lanyards, Sweatbands & More
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Wizid is an Australian company who are wonderfully supportive of Unique and donate $1 to us for every invoice generated. Please support them and buy Wristbands, Lanyards, Sweatbands & More from them online. |
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Family Footings
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Family Footings provides free training events for families of disabled children and children with special educational needs. Family Footings website provides information on how to use person centred thinking and planning to improve outcomes for young people in education, health care and day-to-day support. |
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Contact a Family (CaF)
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Contact a Family is a UK-wide umbrella charity providing advice, information and support to the parents of all disabled children - no matter what their health condition. |
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Ableize Mobility Resource
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Ableize is a virtual library of UK disability resources |
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BDF Newlife
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BDF Newlife is the UK's leading child health research and care charity. BDF Newlife funds pioneering medical research and provides special nurse services and grants to affected families/children.
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Fledglings
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Fledglings is a UKcharity which provides affordable, appropriate and carefully tested products for the specific needs of disabled children and their families and carers. |
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Genetic Alliance UK
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Genetic Alliance UK is a national alliance of patient organisations with a membership of over 130 charities which support children, families and individuals affected by genetic disorders. Unique is an active member of Genetic Alliance UK
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Eurogentest
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Genetic testing in Europe - an EC-funded Network of Excellence for test development, harmonization, validation and standardization. Unique is a partner in Eurogentest. |
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The Office for Disability Issues
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UK government department working towards equality for disabled people. Set up to help government deliver on the commitment made in the report, 'Improving the Life Chances of Disabled People'. Acts as a champion of disabled people. |
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Kings Fund: Free Health & Social Care Info
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The King’s Fund Information and Library Service is a free unique source of information on health and social care policy and is staffed by a team of expert information specialists. |
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Medline
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PubMed is a service of the National Library of Medicine that includes over 16 million citations from MEDLINE and other life science journals for biomedical articles back to the 1950s. PubMed includes links to full text articles and other related resources. |
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Changing Places, Changing Lives Campaign
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Changing Places, Changing Lives 'The Changing Places Consortium has launched a campaign on behalf of the thousands of people with profound and multiple learning disabilities and their carers, and the many other disabled people who cannot use standard accessible toilets.
They need Changing Places toilets. These are toilets with enough space for disabled people and their carers, and the right equipment, including a height adjustable changing bench and a hoist.
There are almost no public Changing Places toilets in the UK. Providing these toilets in public places would make a dramatic difference to the lives of thousands of people who desperately need these facilities. Sometimes you just need to change one thing to open up a world of possibility. The time for change is NOW.'
To find out more and how you can help access the website at www.changing-places.org
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Dad's website
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Website with information just for Dads |
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MumsNet
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Mumsnet is an online network of parents pooling their knowledge on everything from how to get a baby to sleep through the night to the best places to go on holiday with a five-year-old. |
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Netbuddy
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Netbuddy is a website where families of children with special needs can share useful tips |
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DLF Bathing Made Easy
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The Disabled Living Foundation (DLF) has launched a campaign to make its impartial, comprehensive database of equipment for older and disabled people freely available for public use over the internet. Now the DLF has made one section of the database available free-of-charge for public use - 'Bathing made easy'. The more people look at this site, the easier it will be for the rest of the DLF database to be rolled out free of charge. |
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Eurochromnet
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Eurochromnet is a virtual network of support groups based in Europe that are active on behalf of people with rare chromosome disorders. It produces a newsletter ten times each year. Unique is an active member of Eurochromnet. |
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Chromosome Disorder Outreach (CDO)
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USA-based support group for chromosome disorders |
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Valentin APAC
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France-based chromosome disorder support group |
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Leona
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Germany-based chromosome disorder support group |
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Unique Danmark
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Rare chromosome disorder support group for families in Denmark |
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NOC
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Sweden-based rare chromosome disorder support group |
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The Supporting Organisation for Patients with Rare Disease (SORD) in Japan
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Support organisation in Japan for patients with rare diseases |
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Dutch Chromosome Foundation
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Click here for a link to the Chromosome Foundation in the Netherlands who aim to provide information and links for all Dutch families and doctors. |
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Spanish Society of Genetic Counselling
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Click here for information on this recently formed society in Spain |
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SOFT UK
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SOFT UK for for trisomy 13 (Patau’s syndrome), trisomy 18, (Edwards’ syndrome), and related disorders. |
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Frambu in Norway
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Frambu is a national centre of excellence for people with rare disorders and disabilities catering for approximately 100 different rare disorders, including rare chromosome disorders
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Family Federation of Finland
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This link will take you to a translation into Finnish of Unique's Little Yellow Book by the family Federation of Finland and The Mannerheim League for Child Welfare (MLL) |
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AGSA
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The Association of Genetic Support of Australasia facilitates support for those affected directly or indirectly by genetic conditions throughout Australasia. AGSA runs the Rare Treasures support group for people with very rare genetic conditions. |
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Diploid Triploid Mosaicism Discussion Group
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New discussion group for Diploid Triploid Mosaicism |
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Trisomy Kids Are Special
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Trisomy Kids are Special is a web site to raise awareness of all trisomy (especially rarer trisomy) conditions, and to raise funds for the support of trisomy kids through information and other resources. Please help them to raise funds for Unique. Go to
www.trisomykidsarespecial.com
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TRIS
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The Tracking Rare Incidence Syndromes (TRIS) project seeks to increase awareness and knowledge for families and professionals touched by rare trisomy conditions and aims to facilitate improved decision making for optimal services and supports for affected children and their families.
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PKS Kids
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PKS Kids is a non-profit organization aimed at helping all people involved with Pallister-Killian Syndrome, including caregivers, family members, friends, teachers and medical professionals |
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Chromosome 8 disorders
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Yahoo discussion group for chromosome 8 disorders |
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IDEAS
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IDEAS is a USA-based support group for families and professionals interested in the chromosomal conditions known as isodicentric 15 (formerly inverted duplication 15) and interstitial duplication 15. |
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Potocki-Lupski Syndrome Foundation
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The PTLS Foundation is a place for support, advice, guidance, and family interaction for anyone affected by Potocki-Lupski Syndrome (Duplication 17p11.2). |
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PRISMS - Smith-Magenis
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PRISMS is the US-based support group for Smith-Magenis Syndrome. Click here to see their website |
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Chromosome 18 Registry & Research Society (Europe)
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The Chromosome 18 Registry & Research Society (Europe) is a new European organisation set up to cater for the specific needs of those with Chromosome 18 disorders |
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Chromosome 18 Registry and Research Society
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Chromosome 18 Registry and Research Society |
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Max Appeal
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Group in the UK supporting families affected by DiGeorge syndrome, VCFS and 22q11.2 deletion
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Phelan-McDermid Syndrome Foundation
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Organisation supporting families affected by Phelan-McDermid Syndrome based in the USA |
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Chromosome 19 yahoo group
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Climb (Children Living with Inherited Metabolic Diseases)
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Climb is the UK Information Centre for Metabolic Disease. Established in 1981 Climb is the only UK organisation to encompass all metabolic diseases and have world wide links.
The group covers over 700 metabolic diseases, is in contact with over 4000 families, offers information, advice and support and link families and young people affected by these conditions.
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Danish Triple X Syndrome website
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Includes Unique's triple X guide in Danish plus other useful links and information |
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Royal College of Psychiatrists
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Excellent information on mental health issues |
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Directory of National UK Self Help Groups and Support Organisations
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Website with A-Z list of organisations in the UK produced by G-Text (ukselfhelp@googlemail.com) |
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The Challenging Behaviour Foundation
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The Challenging Behaviour Foundation wants to see children and adults with severe learning disabilities, who are described as having challenging behaviour, having the same life opportunities as everyone else, including home life, education and leisure |
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Heartline
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Heartline offers help and support to families of children with heart disorders regardless of their degree of severity |
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Focus on Disability
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A Wide Range of Information for Disabled People, The Elderly and their Carers in the UK |
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MIDIRS (Midwives Information and Resource Service)
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MIDIRS is an educational charity set up in 1985, providing information and practical resources to maternity healthcare professionals |
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