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 |
