ALAN – Maladies Rares Luxembourg is a non-profit association (association sans but lucratif – a.s.b.l) founded in 1998 and declared of public utility in 2000.
It is ALAN’s mission to improve the quality of life of individuals who are affected by a rare disease.
In order to achieve this:
ALAN offers socio-therapeutic support and psychological counselling to people affected by a rare disease.
ALAN offers a range of therapeutic recreational and sportive activities.
ALAN is committed to public outreach activities to raise awareness for rare diseases amongst the public, politicians, authorities and institutions.
ALAN collaborates on the implementation of the National Plan for Rare Diseases to ensure equal access to diagnostics, therapy, care and research for all individuals living with a rare disease.
ALAN works closely with national institutions from the healthcare, social and educational sector.
Internationally, ALAN advocates for the dissemination of information, for the networking amongst patient groups, for increased awareness and for the promotion of research.
The association ALAN was founded in 1998 to support and inform Luxembourg-based individuals affected by neuromuscular diseases.
In 2005, the association expanded its activities to serve people affected by other rare diseases.
ALAN was declared of public utility on the 29th of April 2000.
On the 1st of July 2009 ALAN received its accreditation by the Ministry of Health as a “Centre de consultation et traitement socio-thérapeutique pour personnes souffrant de problèmes médico-psycho-sociaux et notamment de problèmes en relation avec les maladies neuromusculaires et les maladies rares“ under the registration number SANTE 84/09.
In 2014, the association simplified its title from “ALAN - Association Luxembourgeoise d’aide aux personnes Atteintes de Maladies Neuromusculaires et de Maladies Rares“ to “ALAN – Maladies Rares Luxembourg“.
You can read the association’s by-laws here