In 2021, ALAN supported 562 patients and families affected by a rare disease, representing 241 different diseases. The activity report, presented at the recent general assembly, shows that the number of psycho-social consultations carried out by the ALAN team increased by 40% in 2021 compared to the previous year. In addition to its consultation services and adapted recreational and physical activities, the association reinforced its activities in awareness-raising, in the National Plan for Rare Diseases and in advocacy with the goal of making the voices of the rare disease community heard and their needs met.
– The consultation service –
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.
In 2021, the non-profit organisation supported 562 patients and family members, a third of whom were children and adolescents. This number represents a 40% increase compared to the previous year. At the same time, the number of consultations offered by ALAN’s multidisciplinary team has also increased by a third compared to 2020. This increase is partly due to the increased awareness of the Infoline Maladies Rares Luxembourg and the excellent functioning of the Cellule d’Orientation et de Coordination that ALAN co-manages with the medical experts of the Center Hospitalier de Luxembourg (CHL). The Infoline and the Coordination Unit are only two of the many concrete achievements of the National Plan for Rare Diseases.
Another major objective of the National Plan that was achieved in 2021 is the publication of the first ” Guide d’Orientation Luxembourgeois pour les Personnes vivant avec une Maladie Rare”. This guide provides the persons and families concerned with a rare disease with information regrading the services and assistance that are available in different domains and guides them through the various processes.
– Advocacy –
Throughout the past year ALAN’s outreach and national alliance work has also intensified. The association has multiplied its advocacy actions at national and international level thanks to multiple exchanges with the authorities, for example in the context of the pandemic or Luxembourg’s support for the adoption of the very first UN resolution entitled ” Addressing the challenges of persons living with a rare disease and their families” on the 16th of December 16 2021. ALAN also launched 2 major awareness campaigns in 2021: “Light It Up” was the pillar of the Rare Disease Day campaign and “Invisible Hero” was launched in September to fight prejudices and raise awareness for rare and invisible diseases.
– The service for recreational activities –
ALAN organizes recreational and adapted physical activities for its members who are living with a rare disease in order to boost their well-being, confidence and self-esteem. In 2021, ALAN launched three new recreational activities: the “Educational Farm” workshops in collaboration with the Bricher Päerdsstall, the “Assistance dog workshops” in collaboration with ASA asbl (Amicale vun der Schoul fir Assistenzhonn), and the monthly wheelchair accessible « Walk ‘n Talk » tours. In addition, the association continues to offer its relaxation courses, its aquatic activities at the Rehazenter and introductory sessions to horse therapy in collaboration with the Association de Thérapie Equestre (ATE).
– The general assembly –
ALAN’s 2021 Activity Report was presented at the ordinary general assembly, which took place in Mamer on the 28th of April 2022. During this meeting, two new members were admitted to ALAN’s Board of Directors: the association ALAEC (Association Luxembourgeoise d’Aide aux Enfants Cardiaques) represented by Mr. Michel Colin, and Ms. Anne Thoma, MSc, a chemist who lives with a rare disease and has raising awareness for rare diseases for many years. Lastly, the Board of Directors and the team thanked artist Snejana Granatkina, who resigned as a member of the Board for her long-term commitment and the numerous successful collaborative projects.
The full Activity Report (in French) is available here: https://alan.lu/about-us/publications/