When you're 1 in 1 million, the hardest thing is to be seen.
Action regions
Europe
100
childrenToday, around a hundred children in France live with this disease, and have to adapt their daily lives to avoid the sun.
5000
€The cost of a complete set of equipment for a newly-diagnosed moon child not covered by social security or the MDPH.
1 in 1,000,000
This disease is so rare that it affects only one child in 1 million.
Solution
I carry out one sporting challenge per month with a different person to create moments of encounter and visibility around the disease. Each challenge becomes a medium for content shared on Linkedin and those of the participants. The highlight will be the SaintéLyon, a symbolic night-time race for these children. The aim is to generate visibility and support the association.
Use of the money
Every euro is a valuable support. Donations will finance awareness-raising, the purchase of anti-UV equipment and support for families. The amounts may seem large, but even the smallest donation will make a tangible contribution to protecting and extending children's life expectancy. Approximately, 4 to 6 cases are diagnosed every year.
Action regions
Europe
"At night, I can finally run and play and be like the other kids without protecting myself."
Sustainable development goals
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