Finding Support and Connecting with Others
You are not alone. Connecting with others who have similar experiences can make a real difference. Explore charities, patient organisations and support networks that offer information, practical advice and opportunities to connect with other individuals and families affected by rare conditions.
Genetic Alliance UK
Genetic Alliance UK is an alliance of over 200 charities and support groups working together to improve the lives of people in the UK with genetic, rare and undiagnosed conditions. The Genetic Alliance website contains lots of useful information for families, including links to support groups for specific genetic conditions, and more general advice about living with a genetic condition.
SWAN UK (Syndromes Without A Name)
SWAN UK is the only dedicated support network in the UK for families affected by a syndrome without a name – a genetic condition so rare it often remains undiagnosed. The aim of SWAN UK is that every family gets the support that they need, regardless of whether or not they have a diagnosis.
Gene People
Gene People is a UK charity providing information, guidance and emotional support to individuals and families affected by genetic conditions. It offers a helpline, practical resources and opportunities to connect with others facing similar experiences.
Gene People – Newly Diagnosed
Receiving a genetic diagnosis can bring many questions and emotions. Gene People's Newly Diagnosed resource offers helpful information and practical guidance for families adjusting to a diagnosis and looking for support with their next steps.
Unique – Rare Chromosome and Gene Disorder Support Group
Unique provides support, information and networking opportunities to families affected by a rare chromosome disorder or a rare gene disorder. Unique has also produced a range of printable patient resources. Click the link to browse booklets about specific genetic conditions and a selection of practical guides, including a helpful guide for any parent whose child has just received a genetic diagnosis.
Cambridge Rare Disease Network (CamRARE)
CamRARE brings together people living with rare conditions, families, healthcare professionals and researchers. It works to raise awareness, encourage collaboration and improve support and opportunities for the rare disease community.
RareMap
RareMap is an online resource that helps individuals and families discover organisations working in the UK rare disease community. It provides information about charities, support groups and other organisations, making it easier to find relevant services and connections.
EURORDIS – Rare Diseases Europe
EURORDIS is a European organisation representing people living with rare diseases. It works to improve access to information, support and care, and provides a directory to help individuals and families find patient organisations across Europe.
Beacon for Rare Diseases
Beacon for Rare Diseases is a UK charity that supports rare disease patient groups and organisations. It provides training, resources and opportunities for collaboration, helping patient communities strengthen their networks and improve support for people affected by rare conditions.