- RD-Connect Project
- Resources
- Documentation
- Contact
Interested in Rare Diseases Registries? The forthcoming Rare Diseases Registries Workshop on 21st-22nd March 2017 in Madrid, Spain, might be right for you.
This event is supported by the Consumer, Health, Agriculture and Food Executive Agency (CHAFEA) for the dissemination of the 2nd Health Programme results and organized by the Centre for Biomedical Network Research on Rare Diseases (CIBERER), depending on the Instituto de Salud Carlos III.
The workshop will bring together all the key stakeholders in the development of rare disease registries allowing them to share the results from several EU Health Programme projects and Joint Actions funded between 2008-2015.
The workshop will include a variety of issues relevant for rare diseases registries, such as Health Policies on Rare Diseases, rare disease-related European initiatives, interoperability, best practices, challenges and examples of successful European rare disease registries.
Register here: http://ec.europa.eu/chafea/news/news483.html