Living with Genetic Conditions

Genetic Alliance UK

Genetic Alliance UK is a membership organisation of over 230 patient organisations supporting those affected by rare and genetic conditions. For further information and support, please visit the website.

Rare Disease UK

Rare Disease UK has over 2,000 registered supporters including academics, clinicians, industry, individual members and patient organisations.


SWAN UK (syndromes without a name) is the only dedicated support network available for families of children and young adults with undiagnosed genetic conditions in the UK. It is run by Genetic Alliance UK.


Orphanet is a unique resource, gathering and improving knowledge on rare diseases to improve the diagnosis, care and treatment of patients. Orphanet aims to provide high-quality information on rare diseases, and ensure equal access to knowledge for all stakeholders.


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