ALAN’s 2025 Annual Report highlights the scale of support needs among individuals and families affected by a rare disease. Last year, the association’s psycho-social consultation service received a new record of 752 requests for support. This continued growth underscores the challenges of ensuring access and strengthening psycho-social support for people affected by these complex diseases. In a context marked by the launch of the 2nd National Plan for Rare Diseases (PNMR), the association has further strengthened its missions of providing support, information, and advocacy at both the national and international levels.
ALAN’s social workers and psychologists provide support to individuals and families affected by a rare disease, both directly (information, advice, psychological support) and indirectly (coordination of care pathways with healthcare professionals). The association’s 2025 Annual Report, which was presented at the recent General Assembly, shows that last year they supported 752 patients, family members, and other applicants, one third of whom were children and adolescents. Over the past five years, the number of support requests received by ALAN’s psycho-social consultation service has nearly doubled. This trend illustrates the significant needs of families for guidance through a healthcare journey whose impact affects all areas of life.
The year 2025 was marked by the launch of the second National Plan for Rare Diseases (PNMR), confirming the authorities’ commitment to sustainably improving the situation of affected individuals and their families. This new plan aims for advances in access to diagnosis, development of care pathways, awareness-raising, training, as well as innovation and digitalization. In its role as a national alliance representing people affected by rare diseases in the Grand Duchy, ALAN is closely involved in the implementation of the 2nd PNMR and is represented on the Comité National Maladies Rares. In this same context, ALAN continues to actively pursue advocacy actions in Luxembourg and internationally on various topics such as newborn screening, research, and health policies.
Beyond these advocacy efforts, ALAN continues to invest in building the capacities and well-being of affected individuals through awareness activities, training, socio-cultural events, and initiatives promoting inclusion and open exchange. This commitment also relies on the essential involvement of volunteers. In December 2025, ALAN was awarded the quality label “bénévolat” in recognition of its management and support of the volunteers who are essential to the success of its activities and events.
The 2025 activity report was presented at the General Assembly on the 6th of May 2026, in Mamer, during which ALAN had the pleasure of welcoming Ms. Britta Schlüter as a new member of the Board of Directors. In addition to her many years of experience in communication and public relations, Ms Schlüter also brings a strong commitment to the rare disease community. On the same occasion, the association expressed its most sincere thanks to Alphonse Ansay, who, after many years of dedication and committed service, stepped down from the Board of Directors.
The annual report is available on ALAN’s website: https://alan.lu/wp-content/uploads/2026/05/AR-2025_web.pdf
Photo © ALAN / Henri Goergen.
Front row, from left to right: Antoni Montserrat Moliner, Vice-President of ALAN; Jean-Marie Boden, Secretary of ALAN; Christian Erang, Member of ALAN’s Board of Directors; Fernand Grulms, Treasurer of ALAN; Jos Even, Vice-President of ALAN; Dan Theisen, Director of ALAN.
Back row, from left to right: Julie Scheidweiler-Darné, Member of ALAN’s Board of Directors; Shirley Feider-Rohen, Honorary President of ALAN; Anne Thoma, Member of ALAN’s Board of Directors; Britta Schlüter, Member of ALAN’s Board of Directors; Anja Di Bartolomeo, President of ALAN
