Useful links 

• Unique is a UK-based charity that provides information and support to families and individuals affected by any rare genetic disorder.
• Syndromes Without A Name is a project run by Genetic Alliance UK offering support and information to families of children with undiagnosed conditions.
• Genetic Alliance UK is the national charity of patient organisations supporting all those affected by genetic disorders.
• Genetic and Rare Disorders Organisation is a non governmental organisation based in Ireland acting as a national alliance for voluntary groups representing the views and concerns of people affected by or at risk of developing genetic or other rare disorders.
• Wellcome Sanger Institute is a charitably funded genomic research institute which focuses on understanding the role of genetics in health and disease.
• British Society of Human Genetics is a professional society for geneticists in the UK, with links to all the NHS regional genetics services.
• yourgenome.org is a website intended to help people understand genetics and genomic science and the implications for us all.
• insideDNA.org is a website on the latest developments in the fast-moving world of human genomics.
• Genomics England is a flagship project set up by the Department of Health to deliver 100,000 whole genomes from NHS patients by 2017. Initially the focus will be on rare disease, cancer and infectious disease.

Contact information 

If you have already been invited to join the DDD study, please speak to your geneticist or genetic counsellor for more information, or refer to your brochure and information leaflet for further contacts.

If you are a researcher wanting to know more about the DDD study, please see the DECIPHER website or the DDD page on the Wellcome Sanger Institute website

If you are a member of the media, please contact the Media and Public Relations team at the Wellcome Sanger Institute for more information. Email: press.officer@sanger.ac.uk