France

France has taken part in Rare Disease Day since its debut in 2008. Key events have included public gatherings in Paris, a book of rare disease patient stories, and the annual awareness raising campaign aboard national trains and in cinemas. There have also been educational programs launched in French public schools and smaller, regional events. Conferences on rare diseases inform the public of ongoing struggles; and information stands run by the National Alliance Maladies Rares have helped to raise awareness in shopping centres, hospitals and churches. 

In view of the sanitary context, the ‘Alliance Maladies Rares’ and its regional delegations will organise between 6 and 28 February 2021, a rare disease awareness campaign on social media for the general public and a regional illumination of monuments.
 
The Alliance Française, which is coordinating the day in France, was keen this year to work with all rare disease stakeholders under the same banner. This year, volunteers, member associations, rare disease health sectors, rare disease expertise platforms and members of the Rare Disease Platform will be called upon to relay various special events on social media.
 
This campaign will show through testimonials from patients, doctors… the 3 challenges for patients and carers:
 
– Access to diagnosis
 
– Access to treatment
 
– Access to a better quality of life and to the status of citizens like everyone else

You can also get involved! Do you know of any events not listed here? Email us at rarediseased[email protected].

National Alliances

Alliance Maladies Rares

National Alliance
Anne-Sophie Blanchard

Events

Ciné-Débat Le Tiroir – La vie cachée

Ciné-débats gratuits, 100% digitaux. L’objectif est d’inviter chacun à ouvrir les yeux sur les maladies rares dans une démarche bienveillante… Continue reading Ciné-Débat Le Tiroir – La vie cachée

Webinaire Maladies Rares : quels parcours pour les patients ?

A l’occasion de la Journée Internationale des Maladies Rares, vous êtes conviés au premier webinaire des Rendez-Vous du GHU organisé par… Continue reading Webinaire Maladies Rares : quels parcours pour les patients ?

Journée des Maladies Rares 2021
AMIENS

– le Chu d’Amiens s’associe à la filière AnDDI Rares et propose un  ciné débat gratuit en ligne, – l’hôtel de… Continue reading Journée des Maladies Rares 2021

Rare Disease Day 2021

[ENG] On the occasion of the Rare Disease Day 2021, ​Dúshlán is organizing an online event on Feb. 28h, from 11h… Continue reading Rare Disease Day 2021

DES KMS SOLIDAIRES

La Fondation Maladies Rares vous invite à participer à la Journée internationale des maladies rares pour soutenir les 3 millions de personnes… Continue reading DES KMS SOLIDAIRES

Other Friends

Dúshlán

Country Organiser

Fondation Maladies Rares

Country Organiser

Association Fragile X France

Country Organiser

Association IRIS

Country Organiser
Virginie Milière

VHL FRANCE

Country Organiser
Jean Joseph Crampe

Filière Sensgene

Country Organiser