National Rare Disease Alliance
Together we are strongerIn 2021, within the framework of the National Rare Disease Plan, ALAN received the official mandate from the Ministry of Health to manage the National Rare Disease Alliance (Alliance Nationale Maladies Rares, ANMR), in order to federate the associations working in the field of specific rare diseases in Luxembourg.
The national alliance aims to bring together and defend the collective interests of the community of people living with a rare disease, as well as the associations that represent them, both at national and European level, to advocate for better recognition, equal opportunities and political changes that improve the quality of life of the people affected by a rare disease.
In order to optimize the collaboration between the different associations, ALAN has set up the national alliance platform (Plateforme de l’Alliance Nationale Maladies Rares Luxembourg). Currently the following associations and foundations participate in this platform:
- Association Luxembourgeoise des Hémophiles
- Association Luxembourgeoise de Lutte contre la Mucoviscidose
- Association Luxembourgeoise du Syndrome de Rett
- den-i Syndrome de Marfan Luxembourg
- Een Häerz fir kriibskrank Kanner
- EDS Lëtzebuerg
- ELA Luxembourg
- Fondatioun Kriibskrank Kanner
- Association Luxembourgeoise d’Aide aux Enfants Cardiaques
- Wäertvollt Liewen
The members of the national alliance platform meet regularly to discuss concrete actions and projects to implement, such as the contribution to the National Rare Diseases Plan (PNMR), the launch of awareness campaigns, lobbying initiatives, and the organization of trainings for patients.
The national alliance also collaborates with other Luxembourgish patient associations, the Cercle des Associations de Patients, Info-Handicap, and relevant international organizations, such as EURORDIS, AFM-Téléthon, and the French Alliance for Rare Diseases.