The European Organization for Rare Diseases (EURORDIS) is a non-governmental patient-driven alliance of patient organisations and individuals active in the field of rare diseases. Eurordis is dedicated to improving the quality of life of all people living with rare diseases in Europe through advocacy at the European level, support for research and drug development, networking with patient groups, raising awareness and other actions designed to fight against the negative impact of rare diseases on the lives of patients and families. Thalassaemia International Federation (TIF) maintains a close collaboration with, and is an active member of Eurordis, since thalassaemia and other haemoglobin diseases are included among Rare Diseases in Europe. TIF is a member of the European Network of Rare Disease European Federations, as wellas of the DITA (Drugs Information and Access) Task Force of Eurordis.
Some of the health-related policies focused on and promoted by EURORDIS include:
- Transparency policy: continuous efforts to improve transparency, particularly of scientific reports, European Public Assessment reports for the public, and medical literature for the benefit of the patients.
- Promotion of patient information and literacy
- Promotion of the development of clinical trials on rare diseases
- Advocating for correct practices in organ donation and transplantation
- Promotion and support of the funding and development of orphan drugs
For more information, visit the website: http://www.eurordis.org/
