The events organized by the Foundation For Rares Diseases aim at disseminating good practices, share knowledge and provide the best information on all rare diseases. Find all our events on our dedicated website (in French):

ANNUAL scientific meeting

The Foundation For Rares Diseases organizes yearly an annual scientific meeting at the Collège de France in Paris.

Through this event, we offer a day of exchanges, debates, meetings to all the players of the rare diseases field and encourage the emergence of new research projects.

The program is built around oral communications presenting results of the Foundation’s former winning projects. Poster sessions are enriching this day of exchange and sharing of experience. 

This event is free and brings together between 350 and 400 participants.

The presentations in the plenary room are recorded and videos are accessible through our YouTube channel.


REGIONAL meetings

Through its original structure, the Foundation For Rare Diseases is composed by a team of professionals spread throughout the French national territory.

This proximity to the heart of the inter-hospital-university regions provides it with privileged relations with all the local players in the field. Thanks to these contacts and links, the Foundation For Rare Diseases organizes regional symposiums to promote research with local partners.

Speaker giving a talk in conference hall at business event. Audience at the conference hall. Business and Entrepreneurship concept. Focus on unrecognizable people in audience.

'rencontres rare'

Since 2017, the Foundation For Rares Diseases has been organizing a major Congress in the field of rare diseases, the ‘Rencontres RARE’.

This event is organized over two days and brings together the entire rare disease community: public decision-makers, patient representatives, health and research professionals, drug, medical device and health technology manufacturers.

The objective of these congress is to take stock of the state of research and care in this sector and to define new future ambitions in order to provide solutions for the management of these serious, chronic diseases. and disabling.

Next meeting will take place in Autumn 2023.

For more information you can visit our dedicated website (in French):



Training des AcadéMiques sur le DÉveloppement du Médicament

A podcast presented by the Foundation For Rare Diseases with the participation and support of Sanofi Genzyme.

This podcast (in French) offers over 5 episodes, to follow all developmental stages of a drug, from its creation in an academic laboratory to its marketing by the industry.

our videos

One of the mission of the Foundation For Rares Diseases is to inform and promote scientific research on all rare diseases.

Therefore, we designed short educational videos to disseminate knowledge on rare diseases. We are also interviewing researchers to promote scientific progress.