Alliance maladies rares
Created in 2000
Up & running (A)
Existing signals show a regular activitySocial networks
4,186 5,757Activities
Entity types
Location
96 Rue Didot, 75014 Paris, France
Paris
France
Employees
Scale: 2-10
Estimated: 33
Engaged catalyst
41
0 0Added in Motherbase
3 years, 11 months ago
Value proposition
[Automatic translation follows] Collective of 240 patient associations carrying the voice of 3 m of people affected by a rare disease #France
Association recognized of public utility, the alliance rare diseases, collective of 240 patient associations, megaphone of 3 million people concerned (1 French out of 20) by around 7,000 rare diseases often serious, chronicles and incabling in France. Need help? 01 56 53 81 36
The alliance is working for the cause of all rare diseases (6,000 to 8,000 diseases worldwide).
His activism is expressed by the following missions:
-& gt; Actively participate in the development of health policies dedicated to rare diseases (the devices put in place on the diagnosis and the search for therapies benefit the whole company)
-& gt; Promote the integration of people with rare diseases (care/support)
-& gt; Awareness of rare diseases, health professionals today and tomorrow
-& gt; Support patient associations in their daily actions
-& gt; Promote research
Did you know?
-& gt; 80% of rare diseases are of genetic origin
-& gt; More than 75% of the people concerned are children
-& gt; 95% of diseases are incurable
Orphan and rare diseases, genetics, quality of life, health, medical research, help with patients, health policy, and support for associationsOriginal language
Collectif de 240 associations de malades portant la voix de 3 M de personnes touchées par une maladie rare #France
Association reconnue d’utilité publique, l’Alliance maladies rares, collectif de 240 associations de malades, porte-voix de 3 millions de personnes concernées (1 Français sur 20) par environ 7000 maladies rares souvent graves, chroniques et invalidantes en France. Besoin d'aide ? 01 56 53 81 36
L’Alliance œuvre pour la cause de toutes les maladies rares (6 000 à 8 000 maladies dans le monde).
Son militantisme s’exprime par les missions suivantes :
-> Participer activement à l’élaboration des politiques de santé dédiées aux maladies rares (les dispositifs mis en place sur le diagnostic et la recherche de thérapies bénéficient à toute la société)
-> Favoriser l’intégration des personnes atteintes de maladies rares (soins/accompagnements)
-> Sensibiliser, aux maladies rares, les professionnels de santé d’aujourd’hui et de demain
-> Accompagner les associations de malades dans leurs actions au quotidien
-> Promouvoir la recherche
Le saviez-vous ?
-> 80% des maladies rares sont d’origine génétique
-> Plus de 75% des personnes concernées sont des enfants
-> 95% des maladies sont incurables
MALADIES ORPHELINES ET RARES, GÉNÉTIQUE, QUALITÉ DE VIE, SANTÉ, RECHERCHE MÉDICALE, AIDE AUX MALADES, POLITIQUE DE SANTE, and ACCOMPAGNEMENT DES ASSOCIATIONS
Alliance Maladies Rares - Accueil
La mission de l’Alliance Maladies Rares est de susciter, de développer, sur les questions communes aux maladies rares et aux handicaps rares, d’origine génétique ou non, toutes actions de recherche, d’entraide, d’information, de formation et de revendication.
https://alliance-maladies-rares.org/
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