In 2022, ALAN received almost 700 requests for support from people affected by a rare disease, representing around 300 different diseases. The annual report, presented at the recent General Assembly, shows that in 2022 the association has also considerably strengthened its mandate as the National Alliance for Rare Diseases through multiple advocacy actions, such as the call for a second National Plan for Rare Diseases. This year, the General Assembly was marked by a key moment for the association: Shirley Feider-Rohen, president of ALAN since 2013, passed the torch of the presidency to Anja Di Bartolomeo.
– Increase in requests for psycho-social support –
ALAN’s consultation service provides 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. The annual report shows that in 2022 the non-profit organisation supported 698 patients and family members, a third of whom were children and adolescents. This number represents a 24% increase compared to the previous year and a 74% increased compared to 2020. This increase in requests for support showcases the positive impact of the achievements of the first National Plan for Rare Diseases (Plan National Maladies Rares – PNMR), in particular the “Infoline Nationale Maladies Rares” and the Rare Disease Coordination Unit (Cellule d’Orientation et de Coordination Nationale Maladies Rares), which ALAN co-manages with the Centre Hospitalier de Luxembourg.
– Call for a second National Plan for Rare Diseases –
Within the scope of the PNMR and under mandate from the Ministry of Health, ALAN formalized the Alliance Nationale Maladies Rares (ANMR) in Luxembourg at the end of 2021, in order to federate the major players in the field of rare diseases, in particular the patient associations. The national alliance aims to represent the collective interests of the community of people living with a rare disease, both at national and European level, to advocate for better recognition, equal opportunities and political changes that improve the quality of life of people affected by a rare disaease. To set the operational framework for the collaboration between the associations participating in the national alliance, ALAN set up the ” Plateforme d’Alliance ” in 2022.
In addition, ALAN published a position paper, calling for rare diseases to be identified as one of the public health priorities in Luxembourg and for the second PNMR to be adopted from the beginning of 2024. “It is our duty to ask political decision-makers to ensure the measures in favour of people affected by a rare disease continue being pursued thanks to the adoption of a 2nd PNMR in the wake of the first one”, writes Daniel Theisen, director of ALAN, in his Mot du Directeur in the annual report.
– Change of presidency –
ALAN’s 2022 Activity Report was presented at the Ordinary General Assembly, which took place in Mamer on the 20th of April 2023.
During this assembly, Shirley Feider-Rohen, a curative teacher who has been committed to ALAN for 13 years, resigned from her mandate as president. “The last thirteen years were a rollercoaster ride with strenuous as well as uplifting moments. But every single moment was worth it! I am very thankful for all the experiences I could gather, the many inspiring people I could meet and, above all, I am very proud of ALAN’s achievements”, said Shirley Feider-Rohen during her speech.
Anja Di Bartolomeo, communication expert, writer, and vice-president of ALAN since 2021, was elected to be the new president by the Board of Directors. Thanking and praising her predecessor, the new president declared: “It is a true honour to take over ALAN’s presidency. I approach the responsibility associated with this position with great respect and, like Shirley, I will try not to lose sight of the big picture, to always remain close to the people affected by a rare disease and to continue to pursue our ambitious goals, together with my fantastic colleagues from the Board of Directors and the operational team.”
In addition to the change of presidency, Antoni Montserrat Moliner was elected as new vice-president, a role which he shares with Dr. Jos Even, while Jean-Marie Boden was elected as new secretary.
The full Activity Report (in French) is available here: https://alan.lu/wp-content/uploads/2023/05/Rapport-Annuel-2022-web.pdf
Photo © ALAN / Henri Goergen. ALAN’s Board of Directors. Back row, from left to right : Fernand Grulms, treasurer, Dr Jos Even, vice-president, Julie Scheidweiler-Darné, member, Michel Colin, member, Anne Thoma, member, Jean-Marie Boden, secretary, Antoni Montserrat Moliner, vice-president. Front row, from left to right: Anja Di Bartolomeo, current president, Shirley Feider-Rohen, president 2013-2023, Alphonse Ansay, member.
