In early October 2024, the association and national alliance representing people affected by a rare disease in Luxembourg ALAN – Maladies Rares Luxembourg, launched a new interactive awareness campaign with the support of their partners, Association Luxembourgeoise du Syndrome de Rett (ALSR), EDS Lëtzebuerg , Een Häerz fir kriibskrank Kanner , Wäertvollt Liewen and Association Luxembourgeoise d’Aide aux Enfants Cardiaques.
The campaign aims to increase the general public’s awareness for rare diseases, and the impact these diseases have on everyday life, with a special focus on the multifaceted complexity of the path that the affected people have to walk.
The campaign takes seven people affected by a rare disease on an expedition through time and asks them to reflect on their journey with the disease – a journey often marked by misdiagnosis, lack of understanding and emotional upheaval. In a series of short videos, the affected teenagers and adults talk to their “former selves”: If a time machine could take them back to the moment when their symptoms started, what would they say to themselves? What advice would they give their “former selves”?
You can support the rare disease community by sharing the campaign and joining the discussion on social media:
- Instagram : @alanmaladiesraresluxembourg
- TikTok : @alan_maladies_rares_lux
- Facebook : @alanmaladiesraresluxembourg
You can find all the details of the campaign, including the videos, on : https://alan.lu/rare-rewind/
