For Rare Disease Day 2023, the national alliance representing people affected by a rare disease in Luxembourg, ALAN – Maladies Rares Luxembourg, has published a position paper with its partners. Together, they call for rare diseases to be identified as one of the public health priorities in Luxembourg and for the second National Rare Diseases Plan (Plan National Maladies Rares – PNMR) to be adopted from the beginning of 2024. The position paper is supported by an online communication campaign and events that aim to raise awareness about rare diseases.
The position paper
The first National Rare Diseases Plan (Plan National Maladies Rares – PNMR), the main objective of which is to create more equity for people living with a rare disease with regard to access to diagnosis, to medical treatments, to psychosocial care and to their socio-economic rights and to social inclusion, will come to an end in 2023. At this pivotal moment, the non-profit organization ALAN – Maladies Rares Luxembourg, together with its partners, is calling for rare diseases to be identified as one of the public health priorities in Luxembourg and for the second national plan to be adopted from the beginning of 2024.
ALAN has published a position paper, supported by 6 associations working to support people affected by specific rare diseases in Luxembourg, namely Waertvollt Liewen asbl, Fondatioun Kriibskrank Kanner, EDS Lëtzebuerg asbl, the Association Luxembourgeoise d’Aide aux Enfants Cardiaques (ALAEC), Een Häerz fir kriibskrank Kanner asbl and the Association Luxembourgoise des Hémophiles asbl. This document assesses the situation in Luxembourg with regard to rare diseases and argues why it is important that rare diseases become a political priority for the 2024-2028 legislature.
The position paper presents 7 specific proposals which aim to consolidate the achievements of the first national plan and to continue to improve the daily lives of the people affected by a rare disease:
- Promoting access to diagnosis, in particular by expanding the neonatal screening program and increasing the national capacity for genetic analysis.
- Improving the healthcare pathways by persuing the pilot projects of the first national paln and by defining more specific care pathways dedicated to groups of rare pathologies.
- Defining a status for “long-term illness” (“affection de longue durée”).
- Creating a national rare disease register
- Accelerating the development of the Luxembourg Medicines and Health Products Agency (ALMPS)
- Strengthening training and awareness.
- Creating a legal basis for rare disease projects
On Tuesday, the 21st of February 2023, the representatives of ALAN handed the position paper to the president of the health commission, M Mars Di Bartolomeo, and the president of the Chamber of Deputies, M Fernand Etgen.
The awareness campaign and events
In addition to this position paper, the voice of the rare disease community will be amplified for Rare Disease Day through several events and an awareness campaign:
- ALAN closes the “RaReflections” traveling photo exhibition with a ceremony at the “19 Liberté” building of the Spuerkeess, who is the sponsor of the project. The work of photographer Sophie Margue captures moments of reflection of children and adults affected by a rare disease. The exhibition is open to the public until the 28th of February, Monday to Friday from 9 a.m. to 5 p.m.
- ALAN and the council of Hesperange invite to the concert “Rare Music 4 Rare Diseases”, on the 24th of February at 8:00 p.m. In the magnificent setting of the CELO (Hesperange), Noémie Sunnen, Magali Weber and Tatsiana Molkava perform works less known by the general public and therefore “extraordinary”.
- With its partners from the Center Hospitalier du Nord (CHdN) and the Center Hospitalier Emile Mayrisch (CHEM) ALAN is organizing an awareness day in these hospitals on the 27th of February 2023.
- The campaign on social media, including TikTok, Instagram and Facebook, is centered around a series of video testimonials, where people living with a rare disease speak out on various topics, including the challenges and prejudices they face, their wishes and their needs.
The complete position paper is available on ALAN’s webiste : https://alan.lu/wp-content/uploads/2023/02/Position-Paper-2023-final-web.pdf
Photo © Chambre des Députés
