ALAN: 669 Individuals & Families with Rare Diseases Supported in 2023

On Monday 29 April 2024, ALAN - Maladies Rares Luxembourg, a local non-profit organisation which supports people affected by rare diseases, published its 2023 report highlighting key activities and initiatives notably for its recent anniversary.

In 2023, ALAN, the non-profit association representing people affected by a rare disease in Luxembourg, celebrated its 25th anniversary. In this landmark year, the association's consultation service, which was recently recognised by the European Commission, supported 669 individuals and families affected by a rare disease, representing 263 different diseases. In addition to its consultation services and adapted recreational and sporting activities, the association reported it has invested heavily in its mission as a patient representative and alliance, in particular through an advocacy campaign for a second National Rare Disease Plan.

Diseases that affect fewer than five people in 10,000 are defined as rare. In Luxembourg, around 30,000 people are affected by these diseases which are often genetic, chronic, progressive and incurable. The non-profit organisation ALAN has been actively working to support these people and their families to meet the challenges caused by the disease for the last 25 years. ALAN named, among some specific difficulties people with rare diseases may face: a “diagnostic odyssey”, the feeling of isolation, the lack of treatment options, the need to adapt to the professional or educational path and the risk of mental health problems.

The consultation service

ALAN's consultation service provides information and offers psychological monitoring as well as administrative and social support to inform, guide and assist those concerned in several areas, including access to health care, administrative procedures, social rights, education, work, family life and social inclusion. In February 2024, the 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 2023 activity report of the non-profit association showed that the association supported 669 patients, family members and other applicants, a third of which represented children and adolescents.

Last year, ALAN social workers and psychologists carried out more than 1,300 psycho-social consultations, which represented an increase of 15% compared to the previous year, the association noted.

Advocacy for a second National Rare Disease Plan

In February 2023, ALAN published a positioning document together with its partners. They launched an appeal that rare diseases be identified as a public health priority in Luxembourg and that a second National Rare Disease Plan can be adopted from the beginning of 2024. The efforts of the national alliance have borne fruit in November 2023, as the second national plan is now part of the coalition agreement of the new Luxembourg government, specifically mentioning awareness, neonatal screening, the creation of a national register of rare diseases and the creation of a status for long-term illnesses.

The academic session for the 25th anniversary

As part of its 25th anniversary, ALAN organised an academic session on 20 September 2023 in the presence of Luxembourg’s Grand Duchess. The academic session was marked by the publication of the children's book Toni Konfettoni by the writer and president of ALAN, Anja Di Bartolomeo and the illustrator Snejana Granatkina, published by Éditions Guy Binsfeld. In addition, the association launched an online campaign “30,000 hopes – 1 plan” in the autumn of 2023, in order to strengthen its advocacy for a second National Rare Disease Plan.