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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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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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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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Genetic Interest Group
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The Genetic Interest Group (GIG) 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 GIG.
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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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SAFE
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The Special Non-Invasive Advances in Fetal and Neonatal Evaluation Network (SAFE) is an EC-funded Network of Excellence which aims to implement routine non-invasive prenatal diagnosis and cost effective neonatal screening. Unique is a partner in SAFE. |
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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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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 Deletion 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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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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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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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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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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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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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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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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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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