Alliance maladies rares
Created in 2000
- BETA
Up & running (A)
Existing signals show a regular activity Social networks
4,186 5,176Activities
Entity types
Location
96 Rue Didot, 75014 Paris, France
Paris
France
Employees
Scale: 2-10
Estimated: 32
Engaged corporates
35
8 23Added in Motherbase
3 years, 7 months ago
healthtech Value proposition
[Automatic translation follows] Collective of 240 patient associations representing the voice of 3 million people affected by a rare disease #France
Association recognized as being of public utility, the Alliance maladies rares, collective of 240 patient associations, voice of 3 million people affected (1 in 20 French people) by approximately 7,000 rare diseases that are often serious, chronic and disabling in France. Need help? 01 56 53 81 36
The Alliance works for the cause of all rare diseases (6,000 to 8,000 diseases in the world).
Its activism is expressed by the following missions:
-> Actively participate in the development of health policies dedicated to rare diseases (the systems set up for diagnosis and research into therapies benefit all of society)
-> Promote the integration of people affected by rare diseases (care/support)
-> Raise awareness of rare diseases among today's and tomorrow's healthcare professionals
-> Support patient associations in their daily actions
-> Promote research
Did you know?
-> 80% of rare diseases are genetic
-> More than 75% of those affected are children
-> 95% of diseases are incurable
ORPHAN AND RARE DISEASES, GENETICS, QUALITY OF LIFE, HEALTH, MEDICAL RESEARCH, HELP FOR THE PATIENT, 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/
| Corporate | Type | Tweets | Articles | |
|---|---|---|---|---|
 Ville et Eurométropole de Strasbourg National and local authorities, Government Administration, French metropolis | Ville et Eurométropole de Strasbourg National and local authorities, Government Administration, French metropolis | Other 28 Feb 2021 | | |
 Ouest-France Communication Media, Newspaper Publishing | Ouest-France Communication Media, Newspaper Publishing | Other 28 Feb 2016 | | |
 Région Nouvelle-Aquitaine National and local authorities, Government Administration | Région Nouvelle-Aquitaine National and local authorities, Government Administration | Other 23 Mar 2017 | | |
 Sanofi Pharmaceutical, Pharmaceutical Manufacturing | Sanofi Pharmaceutical, Pharmaceutical Manufacturing | Other 10 Feb 2021 2 Jun 2024 | | |
 Région Bretagne National and local authorities, Government Administration | Région Bretagne National and local authorities, Government Administration | Other 27 Jun 2016 | | |
 Leem Startup accelerator & VC, Pharmaceutical Manufacturing | Leem Startup accelerator & VC, Pharmaceutical Manufacturing | Other 10 Nov 2021 6 Jul 2024 | | |
 Mairie de Bordeaux National and local authorities, Government Administration | Mairie de Bordeaux National and local authorities, Government Administration | Other 28 Feb 2021 | | |
 Assemblée des Départements de France NGO, Think Tank, Civic and Social Organizations | Assemblée des Départements de France NGO, Think Tank, Civic and Social Organizations | Other 12 Feb 2020 | | |
 United Nations Office for Disarmament Affairs International development, International Affairs | United Nations Office for Disarmament Affairs International development, International Affairs | Other 10 Feb 2017 | | |
 La Région Occitanie / Pyrénées-Méditerranée National and local authorities, Government Administration | La Région Occitanie / Pyrénées-Méditerranée National and local authorities, Government Administration | Other 24 Jul 2014 | | |