EURORDIS – Rare Diseases Europe
Area of work: Ethical Legal Social Issues
Role: Full Partner
Address: Plateforme Maladies Rares, 96 rue Didot, Paris, 75014, France
Role in RD-Connect:
The EURORDIS Operations Unit aims to promote research on rare diseases for a faster and increased development of diagnostic tools and treatments for patients. The unit also works to promote patients’ access to their treatments as well as transparent and quality information on rare disease research. Within EURORDIS, it intervenes in all actions aiming at stimulating the development of orphan drugs, advanced therapies and paediatric medicines, as well as at increasing the capacities of patients, and patient representatives, in the area of drug development, regulatory affairs, Health Technology Assessment and general issues related to patients’ access to treatments and care. Moreover, the team is engaged in the provision of specialised social services and integration of rare diseases into social policies and services, to develop and maintain social networks of patients and patient groups for specific rare diseases. Staff members from the Operations Unit, as well as other EURORDIS’ representatives, are officially involved in the regulatory processes at EU level (members of the European Medicines Agency’s-EMA- Scientific Committees) and collaborate in European research and public health projects.