The latest updates for the Luxembourg rare disease community

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.

Rare diseases in Luxembourg: a crucial public health issue and a pressing socio-political decision

For Rare Disease Day 2023, the national alliance representing people affected by a rare disease in Luxembourg, ALAN – Maladies Rares Luxembourg, has published a position paper with its partners. Together, they call for rare diseases to be identified as one of the public health priorities in Luxembourg and for the second National Rare Diseases Plan (Plan National Maladies Rares - PNMR) to be adopted from the beginning of 2024. The position paper is supported by an online communication campaign and events that aim to raise awareness about rare diseases.

The “Talk TO me, not ABOUT me” awareness campaign

To fight the prejudices that people living with a rare disease have to face, ALAN and its partners have launched a new communication campaign in September 2022. The slightly provocative message of the original song “Meet Me If You Dare” and the campaign’s Instagram Reels and TikToks encourages open-mindedness while raising the awareness for rare diseases and their impact on the lives of those affected. .

Annual Report 2021

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...

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