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Patient organisations

More information about patient organisations for rare diseases can be found here:

EGAN The Patients Network for Medical Research and Health (EGAN) is an alliance of both National Genetic Alliances and European disease specific patient organisations with a special interest in genetics, genomics and biotechnology
   
VSOP Dutch national umbrella organisation for rare, genetic and congenital disorders and patient partner of the ASTERIX project
   
EURORDIS The voice of rare disease patients in Europe
   
Rareconnect EURORDIS platform where rare disease patients, families and patient organizations can develop online communities and conversations
   
EPF European Patients Forum is an umbrella organisation that represents the interests of an estimated 150 million patients in public health and health advocacy across Europe
   
Genetic Alliance UK charity alliance of over 180 patient organisations, working to improve the lives of patients and families affected by all types of genetic conditions
   
Patients like me US-based website where rare disease patients, families and patient organisations can develop online communities and conversations