ALAN’s recent annual report shows that in 2024, the association’s psychosocial consultation service received 699 requests for support – a record for the non-profit organization and national alliance representing people affected by rare diseases in Luxembourg. Thus, ALAN continued its support, patient empowerment, and advocacy efforts, particularly in light of the launch of the 2nd National Rare Disease Plan
ALAN’s 2024 annual report, presented at the recent General Assembly, shows that the association supported 699 patients and family members, a third of whom were children and adolescents. ALAN’s social workers and psychologists support individuals/families affected by a rare disease directly (through information, advice and psychotherapy) and indirectly (by coordinating their care pathways with professionals). Due to high demand, the service conducted 9% more consultations and multidisciplinary meetings compared to the previous year.
In February 2024, ALAN’s consultation service received the “EU-Promising Practice in the field of Mental Health” label in recognition of its holistic approach to psycho-social support for individuals and families affected by a rare disease. The methodology of ALAN’s consultation service is published on the European Commission’s Best Practices Portal and the association was invited to present its service to the Ministries of Health of the EU members states in March 2024.
In addition to ALAN’s consultation service, the 1st National Plan for Rare Diseases has also promoted Luxembourg’s international visibility. “We have been invited several times in recent months to present the results of this work and the methodology of this plan at international conferences and meetings,” write ALAN President and Director, Anja Di Bartolomeo and Dan Theisen, in the annual report. Indeed, the association has collaborated on over forty projects and advocacy initiatives, particularly concerning health policy, care, and research. “Together, let’s build on these successes to drive the launch of the 2nd National Plan for Rare Disease and give it every chance of success,” conclude the non-profit’s leaders.
In addition to its consultation service, ALAN continues to invest in strengthening the capacities and well-being of people affected by rare diseases. In 2024, the association organized two training sessions for patients and professionals on the topics of diagnosis and communication. ALAN also launched two public awareness campaigns, organized two socio-cultural events, and continues to offer a program of six adapted physical activities to its members.
The 2024 annual report was presented at the General Assembly Meeting on the 29th of April, 2025, in Mamer, where Mr. Christian Erang, representive of the non-profit organization den-i Syndrome de Marfan, was elected as a new member of the ALAN Board of Directors. At the same time, communications expert Britta Schlüter was welcomed as the newest active member of the association.
You can read the annual report (in French) here: https://alan.lu/wp-content/uploads/2025/05/ALAN-Annual-Report-2024-LR.pdf
