NATIONAL ALLIANCE

Alliance Maladies Rares logo
Alliance Maladies Rares

France


Rare Disease Day in 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 [email protected]is.org.



NATIONAL ALLIANCE

Alliance Maladies Rares logo
Alliance Maladies Rares

FRIENDS IN France

Events in France


Ciné-Débat Le Tiroir - La vie cachée image
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...

09 Mar 2021

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Webinaire Maladies Rares : quels parcours pour les patients ? image
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...

02 Mar 2021

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Journée des Maladies Rares 2021 image
Journée des Maladies Rares 2021

- le Chu d'Amiens s'associe à la filière AnDDI Rares et propose un  ciné débat gratuit en ligne,- l'hôtel de ville d'Amiens...

28 Feb 2021 - Amiens

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DES KMS SOLIDAIRES image
DES KMS SOLIDAIRES

La Fondation Maladies Rares vous invite à participer à la Journée internationale des maladies rares pour soutenir les 3 millions...

28 Feb 2021

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Rare Disease Day 2021 image
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 to 16h (french...

28 Feb 2021

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Illumination de l'Hôtel de Ville de Basse-Terre en Guadeloupe aux couleurs de la Journée Internationale des Maladies Rares image
Illumination de l'Hôtel de Ville de Basse-Terre en Guadeloupe aux couleurs de la Journée Internationale des Maladies Rares

A l'occasion de la journée mondiale des maladies rares, plusieurs monuments se pareront en région des couleurs de la journée...

26 Feb 2021 - 28 Feb 2021 - Basse-terre

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The Story of my Skin - Art Contest image
The Story of my Skin - Art Contest

ART CONTESTThe skin is to the body what the painting is to the painter: it always tells a story...The Fondation René Touraine,...

02 Jan 2021 - 28 Feb 2021

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The Story of my Skin - Art Contest image
The Story of my Skin - Art Contest

ART CONTESTThe skin is to the body what the painting is to the painter: it always tells a story...The Fondation René Touraine,...

01 Jan 2021 - 28 Feb 2021 - Paris

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