Advocacy
Achieving our vision of an environment where individuals living with a rare disease can realize their full potential is only possible through intense advocacy work. To fulfill its mission as the National Rare Disease Alliance, ALAN focusses on the following aspects to advocate for better recognition, equal opportunities and policy changes that improve the quality of life of people living with a rare disease:
National Advocacy
ALAN actively participates in the implementation of the National Plan for Rare Diseases. Several members of ALAN’s operational team and Board of Directors sit on the National Committee for Rare Diseases. In addition, they contribute to no less than 12 different working groups within the National Plan, working on issues such as the creation of a national rare disease registry, the setting up of a rare disease guidance unit and the reimbursement of medication.
ALAN also liaises with government officials and publishes statements to draw their attention to specific issues, such as access to treatment during the COVID-19 pandemic or school transportation for children with special needs. In addition, ALAN organises and participates in national conferences, workshops & round tables to specifically raise awareness for rare diseases within the healthcare, social and educational sectors.
International Partnerships
To defend the interests of all individuals affected by a rare disease, as well as their respective representation groups, at both a national and international level, ALAN develops and fosters many cross-border partnerships. ALAN engages with international organisations having similar goals, such as AFM-Téléthon, national umbrella organizations for rare diseases from other countries or EURORDIS, an international alliance of more than 900 rare disease patient associations. Since 2005, ALAN has been recognized as the Luxembourgish national alliance by EURORDIS and actively participates in the biannual meetings of the “Council of National Alliances” as well as in international projects, such as the Rare 2030 project, in awareness campaigns and in congresses.
Awareness raising
Raising awareness for rare diseases among the general public, policy makers, healthcare professionals, education institutions, and social organisations, has always been an integral part of ALAN’s mission. Each year, ALAN participates in numerous general public events through information booths or presentations. ALAN’s consultation team also proposes visits to schools attended by a child living with a rare disease, thus helping both teachers and classmates understand the impact of the disease on the child. Finally, ALAN regularly launches communication campaigns through traditional and social media. The goal of these campaigns is to create awareness, facilitate understanding and provoke reactions.
Patient Empowerment
ALAN seeks to ensure that individuals living with a rare disease find the necessary personal resources and confidence to take charge of the decisions and actions affecting their health and well-being. Hence, ALAN regularly organises information sessions, educational trainings and workshops relevant to the community of rare diseases. ALAN also encourages participation in selected international patient surveys to guide policy changes, such as the Rare Barometer Voices surveys by EURORDIS.
