Tuesday, February 16 at 9:30 a.m. - Press videoconference " Rare diseases and COVID19: an effective French model "
COVID19 is a "double punishment" for patients affected by a rare disease. Faced with this new threat, data and expertise are rare. However, thanks to a unique collaboration between doctors, health professionals and patient associations, notably within the framework of the Filières de Santé Maladies Rares, initiated and co-structured by rare disease stakeholders in France, the needs and emergencies of the families concerned have been taken into account. This efficient organization has made it possible to identify patients who are considered to be of the highest priority for access to vaccines. This unique organization makes France the only European country capable of providing such care*.
On the occasion of International Rare Disease Day, which will take place on Sunday 28 February, the actors of the Rare Disease Platform will take stock of the impact of the health crisis on rare diseases, the lessons to be learned and to be promoted in the perspective of the French Presidency of the Council of the European Union in the first half of 2022 .
Zoom link sent after registration : 01.69.47.29.01.- presse@afm-telethon.fr