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.
Fostering an environment for people living with a rare disease to realize their full potential through recognition, equal opportunities and improved quality of life.
To help improve the quality of life of individuals and families affected by a rare disease, ALAN:
provides a consultation service that offers psychological counselling, as well as social and administrative support to inform, guide and assist people in aspects such as access to healthcare, administrative procedures, social rights, education, work, family life and social inclusion;
offers a range of adapted recreational and physical activities to improve well-being, self-confidence and self-esteem;
disseminates information to increase awareness amongst the public, decision-makers, authorities and institutions;
actively participates in 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;
facilitates interdisciplinary exchanges between professionals from the healthcare, social and educational sectors;
promotes education, capacity building and empowerment of individuals affected by a rare disease;
defends the interest of all individuals affected by a rare disease, as well as their respective representation groups, at both a national and international level;
promotes scientific research on rare diseases;
develops and fosters international partnerships, particularly with other patient organisations;
therefore, advocates for recognition and policy changes on a national and European level.
At ALAN, we stress three core values that guide our professional and personal behaviour:
Integrity – adhering to strong ethical principles and protecting the trust that patients and their families place in us
Empathy – being considerate and sensitive towards all individuals regardless of their situation
Team spirit - working together within and across teams, institutions and borders, because together we are stronger
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