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Useful Links

SWAN UK offers support and information to families of children with undiagnosed genetic conditions
DDD Deciphering Developmental Disorders Project  
Living in the UK and your child is undiagnosed? Click here for details of the DDD project For more information, please see or speak to your geneticist.
Wizid Wristbands, Lanyards, Sweatbands & More  
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.
WellChild/RCN Better at Home Campaign  
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
Ableize Mobility Resource  
Ableize is a virtual library of UK disability resources
Family Footings  
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.
Contact a Family (CaF)  
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.
BDF Newlife  
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.
Fledglings is a UKcharity which provides affordable, appropriate and carefully tested products for the specific needs of disabled children and their families and carers.
Genetic Alliance UK  
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
Genetic testing in Europe - an EC-funded Network of Excellence for test development, harmonization, validation and standardization. Unique is a partner in Eurogentest.
Kings Fund: Free Health & Social Care Info  
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.
The Office for Disability Issues  
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.
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.
Changing Places, Changing Lives Campaign  
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
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.
Dad's website  
Website with information just for Dads
DLF Bathing Made Easy  
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.
Disability Benefits Help  
Disability Benefits Help is an organization that provides information about the disability application and appeals process in the USA, including resources for parents applying for their children.
ARCAN - Australian Rare Chromosome Awareness Network  
ARCAN is the network for families in Australia who are affected by rare chromosome disorders. Click here to view their website.
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.
Chromosome Disorder Outreach (CDO)  
USA-based support group for chromosome disorders
Valentin APAC  
France-based chromosome disorder support group
Germany-based chromosome disorder support group
Unique Danmark  
Rare chromosome disorder support group for families in Denmark
NOC is a Swedish network for families living with rare chromosome disorders
Russian Association of Rare Diseases (RARD)  
The Russian Association of Rare Diseases (RARD) is the biggest umbrella rare disease NGO in Russia and it unites patients with many different rare diseases including chromosomal disorders.
The Supporting Organisation for Patients with Rare Disease (SORD) in Japan  
Support organisation in Japan for patients with rare diseases
Spanish Society of Genetic Counselling  
Click here for information on this recently formed society in Spain
Dutch Chromosome Foundation  
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.
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.
Family Federation of Finland  
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)
Frambu in Norway  
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
SOFT UK for for trisomy 13 (Patau’s syndrome), trisomy 18, (Edwards’ syndrome), and related disorders.
Diploid Triploid Mosaicism Discussion Group  
New discussion group for Diploid Triploid Mosaicism
Cohen Syndrome Association  
The Cohen Syndrome Association is focused on raising awareness of the disorder and connecting families all over the world.
Trisomy Kids Are Special  
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
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.
International Trisomy 13 18 Alliance  
The Alliance is a volunteer, not-for-profit organisation focusing on trisomy 13 and trisomy 18, (also known as Patau and Edwards syndromes respectively) whose mission is to offer trisomy 13 and trisomy 18 support groups, physicians and other professionals, accurate information and resources, and to be a mechanism for sharing between groups.
Trisomy 18 13 Support UK  
The group's mission is to help those dealing with the complex conditions Trisomy 13 and 18, including mosaic forms, to lead a 'life more ordinary'. They are parent driven and support families:
Turner Syndrome Support Society  
Turner Syndrome Support Society is a national support group offering support and information to anyone affected by Turner Syndrome.
PKS Kids  
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
Phelan McDermid Syndrome Foundation  
PMSF provides support for families in the UK affected by Phelan McDermid Syndrome
Chromosome 8 disorders  
Yahoo discussion group for chromosome 8 disorders
Potocki Shaffer Syndrome  
Parent-led group for families affected by Potocki Shaffer Syndrome caused by a deletion in 11p11.2
11q Espana  
Spanish group for 11q disorders
Idic 15 Canada  
Idic15 Canada is a Canadian based Non-Profit Society, that provides Collaboration, Advocacy and Clinical Research Initiatives for Global families living with Chromosome 15q11.2-13.1 Duplication Syndrome and all the variants
Dup 15q Alliance  
The Dup 15q Alliance is a USA-based support group for families and professionals worldwide interested in Idic 15 and other duplications involving the region 15q11q13 but not duplications of other regions of 15q
Potocki-Lupski Syndrome Foundation  
The PTLS Foundation is a place for support, advice, guidance, and family interaction for anyone affected by Potocki-Lupski Syndrome (Duplication 17p11.2).
PRISMS - Smith-Magenis  
PRISMS is the US-based support group for Smith-Magenis Syndrome. Click here to see their website
Chromosome 18 Registry & Research Society (Europe)  
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
Chromosome 18 Registry and Research Society  
Chromosome 18 Registry and Research Society
Chromosome 19 yahoo group  
Phelan-McDermid Syndrome Foundation  
Organisation supporting families affected by Phelan-McDermid Syndrome based in the USA
Max Appeal  
Group in the UK supporting families affected by DiGeorge syndrome, VCFS and 22q11.2 deletion
Danish Triple X Syndrome website  
Includes Unique's triple X guide in Danish plus other useful links and information
Climb (Children Living with Inherited Metabolic Diseases)  
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.
Royal College of Psychiatrists  
Excellent information on mental health issues
The Challenging Behaviour Foundation  
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
Heartline offers help and support to families of children with heart disorders regardless of their degree of severity
Focus on Disability  
A Wide Range of Information for Disabled People, The Elderly and their Carers in the UK
MIDIRS (Midwives Information and Resource Service)  
MIDIRS is an educational charity set up in 1985, providing information and practical resources to maternity healthcare professionals