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 | |
|---|---|---|---|---|
 | Gouvernement | Other 2 Jun 2024 | | |
 | Ministère de la Santé | Other 6 Dec 2024 | | |
 Ministère de l'Enseignement supérieur et de la Recherche Government Administration | Ministère de l'Enseignement supérieur et de la Recherche Government Administration | Other 29 Feb 2024 | | |
 UCB Pharmaceutical Manufacturing | UCB Pharmaceutical Manufacturing | Other 2 Jun 2024 | | |
 Takeda Pharmaceutical, Pharmaceutical Manufacturing | Takeda Pharmaceutical, Pharmaceutical Manufacturing | Other 2 Jun 2024 | | |
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 Pfizer Pharmaceutical, Pharmaceutical Manufacturing | Pfizer Pharmaceutical, Pharmaceutical Manufacturing | Other 24 Nov 2022 2 Jun 2024 | | |
 Ipsen Pharmaceutical, Pharmaceutical Manufacturing | Ipsen Pharmaceutical, Pharmaceutical Manufacturing | Other 2 Jun 2024 | | |
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