Living with Genetic Conditions

Genetic Alliance UK

https://www.geneticalliance.org.uk/our-members/

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

https://www.raredisease.org.uk/supporters/

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

SWAN UK

https://www.undiagnosed.org.uk/

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

https://www.orpha.net

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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