Category: News
ERN-RND supports Open letter to the European Commission
EURORDIS Guide on patient involvement
EURORDIS – Rare Diseases Europe developed a short guide to explain in simple and practical terms how to involve patients and patient representatives in the development of clinical practice guidelines and consensus statements.
You may download the guide here.
ERN support Ukraine – Rare Diseases Hub Ukraine
Rare Diseases Doctors
The 24 European Reference Networks (ERNs) for rare and complex diseases are united to support all Ukrainian patients.
Rare Diseases Hub Ukraine
This application connects patients from Ukraine with a rare disease with organizations and hospitals, members of the European Reference Network (ERN), with the aim to provide the specialized medical support they may need during this emergency.
