24hrs with a rare disease
ordinary days, extraordinary resilience
In late October 2025, the association and national alliance representing people affected by a rare disease in Luxembourg ALAN – Maladies Rares Luxembourg, launched a new online awareness campaign with the support of their non-profit partners, Association Luxembourgeoise du Syndrome de Rett (ALSR) and EDS Lëtzebuerg .
The campaign aims to increase the general public’s awareness for rare diseases, and their impact by showing 24 hours in the daily lives of 6 children and adults living with a rare disease.
The expression “we all have the same 24 hours in a day” is often used to convey the idea that everyone can be productive if they really want to and stay on top of things. This implies an equality that does not reflect reality for most people living with a chronic diseases and their caregivers.
Living with a rare disease presents its share of challenges: between the symptoms, medical appointments, everyday tasks, or simply managing our limited energy, it’s not easy to find the time to do the things you really want to.
The awareness campaign shows the everyday real life of people living with a rare disease and encourages people to keeping some time to pursue activities that fill their cup, as these are paramount for our physical and mental health, whether you live with a rare disease or not.
Support the campaign by sharing the videos or actively taking part on social media: Facebook, Instagram & TikTok !! (details at the bottom of this page)
A huge THANK YOU to our partners ALSR & EDS Lëtzebuerg and to our ambassadors Stéphanie, Amy, Shola, Jessica Laurent and Maria for their courage, openness and honesty.
The Instagram Reels and TikToks
The video will be published soon
The video will be published soon
The video will be published soon
The video will be published soon
The video will be published soon
The video will be published soon
Support the campaign
You can support the rare disease community by sharing the campaign and joining the discussion on social media:
Facebook, Instagram & TikTok!! Simply click on the buttons below.
Support the campaign
Support the campaign
Support the campaign
The campaign partners
Association Luxembourgeoise du Syndrome de Rett
ALSR is an association funded by volunteers, with the mission to raise awareness for Rett Syndrome, to support people with Rett Syndrome and their families, and to advocate for the recognition of people with Rett Syndrome within the community.
Rett Syndrome is a rare genetic disease that mainly affects girls, causing mental disability and severe motor impairment.
EDS Lëtzebuerg is a non-profit organisation founded in 2021. It’s mission is to inform and enlighten the general public about Ehlers-Danlos syndrome, to contribute to the dissemination of information on screening and treatment methods for Ehlers-Danlos syndrome and to provide information, advice and support for people with Ehlers-Danlos syndrome and help for them and their families.