Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.

L’Alliance Maladies Rares, which coordinates the rare disease day in France, brings together all rare disease stakeholders under the same banner from 6 February to 28 February 2021.

Members of rare diseases platform, volunteers, members associations, rare diseases networks...will disseminate and relay the campaign entitled "Let's make an alliance for rare diseases: #YESWENAME" on the social networks Facebook, Twitter, LinkedIn, Instagram and websites.

More information about rare disease day : https://www.rarediseaseday.org/


The European Reference Network on Rare Inherited and Congenital Anomalies (ERNICA) realized an animation video for parents and families about care and nutrition in Esophageal Atresia. To share!

RAREfest20 is a free, virtual and interactive festival featuring interactive science, technology, advocacy and arts exhibition linked with rare diseases. It’s organized by the Cambridge Rare Disease Network this November 28th.

RAREfest20 eventbrite email image 2

The purpose of RAREfest20 it's to spark curiosity, challenge perceptions, inspire innovation and collaboration and give a voice to rare disease patients and their families.

All day long, people will be access to exhibition stands, live demos, talks and panel discussions, rare art, films, scavenger hunt challenge and more.

The festival is open to the general public, patients, families, children, students, healthcare professionals, researchers, companies.

Tickets are free and available through this platform: registration

For more information visit the RAREfest20 website.



The FIMATHO health network is pleased to announce the launch of the English version of its website!

Almost all the website has been translated in order to make its content accessible for all rare diseases stakeholders across the world.

This new website version is available via the “flag” button located on the header banner or from the URL: https://www.fimatho.fr/en/

Have a nice visit on our website, in French or in English!