Help us improve CotizUp
We use cookies 🍪 to understand how CotizUp is used, improve your experience and offer you tailored content.
We use cookies 🍪 to understand how CotizUp is used, improve your experience and offer you tailored content.
This fundraising has been controlled and verified by CotizUp.
A picture is worth a thousand words :
Imrane, 9 years old, is losing his sight because of a rare genetic disease! Help us fund his treatment and research! 🔬
Imrane, our little 9-year-old boy, now has an angel’s smile and the courage of a hero ♥️
At age 5, we learned that he has a rare genetic disease caused by a mutation in the CLN3 gene 🦠
This disease gradually destroys the cells of the eyes and the brain. It is an illness that, unfortunately, progressively robs vision. Very often, from around age 11, epileptic seizures appear, as well as loss of mobility and speech, and they rapidly lead to a fatal outcome…
It all started when we noticed that Imrane was having trouble reading and recognizing familiar faces. 👨👩
After an initially reassuring consultation, we noticed worrying behavior. We decided to see another specialist, who gave us the devastating diagnosis…
His sight will gradually fade. Our world was turned upside down that day 💔
Today, he can no longer see, but he continues to amaze us every day with his strength, his tenderness and his zest for life 💪
We know that there is a treatment currently available in the USA 🇺🇸 that could help Imrane by slowing the progression of the disease. Unfortunately, it is not covered by France’s Social Security system, and its astronomical cost far exceeds our means 💰
That is why we are calling on your solidarity and generosity, so that Imrane can access this treatment. Every donation counts, every gesture makes a difference 🫶🏼
This fundraiser will help Imrane access the treatment he needs, but also support research programs for gene therapy, which bring hope for him and for so many other children affected by this rare and little-known disease.
Thank you from the bottom of our hearts to everyone who supports us, shares our story or contributes to this fundraiser 🙏🏼
Thanks to you, Imrane keeps hope alive, and so do we.💚
Chers généreux donateurs,
Je tiens à vous exprimer ma plus profonde gratitude pour votre incroyable soutien et votre générosité dans le cadre de ma cagnotte dédiée à la recherche clinique sur la maladie de l'amaurose de Leber. Votre contribution a un impact immense non seulement sur moi, mais surtout sur mon fils qui est touché par cette maladie rare.
Vos dons nous permettront de financer la recherche clinique de cette maladie orpheline, des études approfondies et des essais prometteurs. Votre générosité donnera aux chercheurs et aux scientifiques les moyens nécessaires pour explorer de nouvelles voies thérapeutiques.
Il est réconfortant de savoir que nous ne sommes pas seuls dans cette lutte contre les maladies rares. Votre soutien indéfectible nous donne de l'espoir et nous encourage à persévérer dans notre quête d'un avenir meilleur pour tous les patients touchés par cette maladie.
Merci du fond du cœur pour votre soutien inestimable.
Bien à vous,
Association EADELE
Popular fundraising
You are on this fundraising
Did you know? If everyone gives at least now, the fundraising will move forward by . Already 10926 participants, join them!
According to our statistics, a single share raises an average of 30 euros.
Fundraising link :
€95,874 left to raise
€204,126 already raised
10.9k people have already participated
Goal: €300,000
Reply to