Behind the Mystery: Epidermolysis Bullosa (EB)
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- Опубликовано: 6 фев 2025
- The EB Research Partnership is the largest global organization dedicated to funding research to treat and cure Epidermolysis Bullosa or EB. Their goal? To cure EB by 2030 with the Venture Into Cures methodology, which is changing the model for rare disease research funding.
We’re joined by Michael Hund, CEO of the EB Research Partnership, and Alexander Gambon, Chief Brand Officer at Elongate, who together are bridging the gap between cryptocurrency and charity. We'll also sit down with Chris and Eileen Attar, whose 5-year-old son Brady has EB, to see how this disease affects their family and how they are determined to have their son live a full life, despite his rare disease.
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Amazing. Elongate x EB ❤️. Nice Team.
Amazing. Elongate & EB Research 💚💚
Great cause and what a revolutionary purpose
Elongate X EB, simply amazing thank you!
Thank you so much for sharing! My son has RDEB as well and he's almost 25 years old. Worst disorder ever.
We are here for you and families alike!
@@TheBalancingActTV hallo. I have a question. My cousins son was born with those blisters on hands and like a wounds on feet they said thats eb , he is currently 2 weeks old. He have no blisters on other body parts, just hands feet and one litle on nose and mouth. In those two weeks he has not new blisters on body , just on hands some are new and on feet ist more like a burn skin . I just want some explanation cann we do something to help him and stop this disorder. Is there a cure . Im just so frightened by the thought of the eb
Love the good work that Elongate is making possible!
Bradyyyyy ❤️❤️❤️❤️❤️
Hello,
I watched your video and I think we both are suffering from the same disease. My name is
[Ahmed sher Kandhro],
I am 21 years old and I have Epidermolysis Bullosa (EB). Initially, my condition was severe, but now it has improved.
I am from Kotdi, Talka Rohdi, District Sukkur, Sindh, Pakistan. I would like to discuss my experiences and knowledge about EB with you. Can we talk about it?
Looking forward to hearing from you.
So important!!👏🏾👍🏻
Elongate is helping to change the world ♥️