Recruitment : psychologist
D’a.s.b.l. ALAN – Maladies Rares Luxembourg sicht, fir ee Congé de maternité/parental ze ersetzen, een diploméierte Psycholog/ Psychotherapeut (m/w)
News
The latest updates for the Luxembourg rare disease communityRecruitment : coordinator of the national alliance
Pour remplacer un congé de maternité/parental l’a.s.b.l. ALAN recherche un Chargé de mission affaires publiques/Coordinateur d’alliance (m/f)
Annual Report 2023
In 2023, ALAN - Maladies Rares Luxembourg, the non-profit organisation and national alliance representing people affected by a rare disease in Luxembourg, celebrated its 25th anniversary. In this historic year for the association, its consultation service, which was recently recognized by the European Commission, supported 669 people and families affected by a rare disease, representing 263 different diseases.
ALAN’s psycho-social consultation service is recognized by the European Commission
In February 2024, the consultation service of ALAN Maladies Rares Luxembourg 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.
Rare Disease Day 2024
On the 29th of February 2024 we celebrate the 17th Rare Disease Day, a day dedicated to raising awareness about rare diseases and their impact on the lives of those affected, including approximately 30,000 people in Luxembourg. Lead by EURORDIS, the international alliance of over 1000 associations for patients with a rare disease, thousands of people unite each year on the last day of February to organise campaigns and events to raise awareness in more than 100 different countries...
Recruitment : psychologist
D’a.s.b.l. ALAN – Maladies Rares Luxembourg sicht, fir säin Team ze verstäerken, een diploméierte Psycholog/ Psychotherapeut (m/w)
Offices closed during christmas holidays
Our offices, including the Infoline Maladies Rares Luxembourg, will be closed from the 23th of December 2023 to the 2nd of January 204.
We wish our whole community serene holidays among their loved ones and a happy New Year.
ALAN’s 25th anniversary: academic session, children’s book & advocacy campaign
This year, ALAN celebrates its 25th anniversary. To celebrate this milestone, the association organized an academic session at the “Kinneksbond” Cultural Center in Mamer, on the 20th of September 2023 in the presence of HRH the Grand Duchess. The academic session marked the publication of the children's book “Toni Konfettoni” by the writer and president of ALAN, Anja Di Bartolomeo and the illustrator, Snejana Granatkina, and published by Éditions Guy Binsfeld.
Results from the Rare Barometer survey on the diagnostic odyssey
The EURORDIS Rare Barometer survey on the diagnostic odyssey of rare disease patients shows, among other things, that in Luxembourg:
• it takes 5 years on average between the appearance of first symptoms to the the confirmation of the diagnosis.
• > 60% of people with a rare disease consulted 5 or more health professionals during their journey to receive a diagnosi
• > 60% of people with a rare disaease experienced a delay in access to appropriate care/treatment following a diagnostic error...
General Assembly: annual report & new president
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.