The latest updates for the Luxembourg rare disease community

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.

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...

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.

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