Rare Rewind
What would you say to your former self?
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”?
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, in particular ALSR, and to our ambassadors Vicky, Abby, Jean-Francis, Manon & Nathasha, Lara, Cassandra and Stéphanie for their courage, openness and honesty.
The Instagram Reels and TikToks
Support the campaign
You can support the campaign and the ‘rare community’ by sharing the campaign videos and joining the discussion on social media.
If you feel like reflecting on your own journey with a rare disease, we encourage you to share your photos from the past with a text of what you would say to your ‘former self’. Post these photos and videos on social media, tag ALAN and don’t’ forget to use the hashtag #rarerewind. We look forward to reading your messages and advice!
Find the campaign videos and our Facebook, Instagram & TikTok accounts, by simply clicking 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.
Een Häerz fir kriibskrank Kanner
The non-profit organisation “Een Häerz fir kriibskrank Kanner” supports families with children, adolescents and young adults with cancer.
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.
Association Luxembourgeoise d’Aide aux Enfants Cardiaques a.s.b.l.
The Association Luxembourgeoise d’Aide aux Enfants Cardiaques (« Häerzkrank Kanner zu Lëtzebuerg », abbreviated to ALAEC was founded in January 2002. Its main aim is to support children and their parents, alongside treating cardiologists, at these key moments in their lives.
The association’s main objectives are as follows:
• Facilitate contacts between the people concerned;
• Organize regular meetings, exchanges and information sessions;
• Raise public awareness of the problems faced by children with heart disease;
• Offer social and psychological support to children and their families;
• Provide administrative and financial information;
• Support research into congenital heart disease.
The Association Luxembourgeoise d’Aide aux Enfants Cardiaques asbl is recognized as a public utility by the Grand Ducal decree of January 15, 2022.It also signed the volunteer charter on 5.12.2014.
The association “Wäertvollt Liewen” a.s.b.l., founded in February 2012, serves as a link between
people affected by Amyotrophic Lateral Sclerosis (ALS), or Charcot disease, a serious
neurodegenerative disease that reduces the life expectancy of those affected or similar pathology
and the authorities. The objective of “Wäertvollt Liewen” a.s.b.l. is to help set up in the Grand Duchy of Luxembourg a national reference and competence network for people affected by Amyotrophic Lateral Sclerosis (ALS) or a similar pathology.