3.3K views · 42 reactions | Epidermolysis Bullosa (EB) 曆 is a family of rare genetic disorders that affect the body's largest organ: the skin. Learn the basics of this life-threatening disease. https://www.ebresearch.org/what-is-eb.html | EB Research Partnership | Facebook
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3.3K views · 42 reactions | Epidermolysis Bullosa (EB) 曆 is …
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At just 22, and living with Epidermolysis Bullosa (EB), Santy is turning pain into purpose, using music to create joy, connection, and hope. His journey shows that EB doesn’t define a person’s future… passion, creativity, and community do. This video was created by Chiesi Global Rare Diseases, a leader in developing innovative therapies for rare diseases. Their work helps move us closer to a world where every family living with rare conditions has equal access to the care and treatments they des
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At just 22, and living with Epidermolysis Bullosa (EB), Sant…
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180 reactions · 41 shares | At EBRP, we have one bold audacious goal: heal and cure EB by 2030. In the process, we’re pioneering a model that can benefit the more than 400 million people affected by a rare disease. 曆 The future is bright and with your support we can cure EB. Learn more and support here: ebresearch.org/ebrp_new | EB Research Partnership | Facebook
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180 reactions · 41 shares | At EBRP, we have one bold audacious goal…
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Our Co-founders Jamie and Alex Silver talk about what it was like to learn their son, Jackson, was born with Epidermolysis Bullosa (EB) and how they're working to heal this rare, genetic disorder for all of the families in the EB Community. We're so thankful for our co-founders Jamie and Alex Silver who are committed to finding a cure for EB. Learn more about EBRP at ebresearch.org. | EB Research Partnership
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Our Co-founders Jamie and Alex Silver talk about what it was like t…
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7.7K views · 72 reactions | Spreading awareness for #EB on the streets of NYC 曆  Learning how to say Epidermolysis Bullosa could be the first step to fighting for a cure alongside us. | EB Research Partnership | Facebook
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7.7K views · 72 reactions | Spreading awareness for #EB on t…
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At EBRP, we have one bold audacious goal: cure EB by 2030. In the process, we’re pioneering a model that can benefit the more than 400 million people affected by a rare disease. ​With the generous support of people like you, Tom Holland, and The Brothers Trust, EBRP achieved a record breaking year in 2023 for dollars raised and research funded. We raised more than $8 million to fund 18 innovative research projects across 5 countries. We're excited to continue this momentum in 2024. Learn more at
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At EBRP, we have one bold audacious goal: cure EB by 2030. I…
904 viewsFeb 2, 2024
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98 reactions · 92 shares | This #EBAwarenessWeek, we need you…
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