EB Research Partnership
@EBResearch
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EB Research Partnership funds research aimed at treating and curing Epidermolysis Bullosa (EB). 🦋 #HealEB 🔬 Find a cure
New York, NY
Joined June 2013
BREAKING TODAY: EB families stood on the floor of the @NYSE this morning as we rang the Opening Bell 🦋 This moment wasn’t just symbolic, it was a powerful call for visibility, urgency, and hope in the fight against EB. Together, we’re turning awareness into action and pushing
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In Thailand, Dolores shared her journey of living with EB, and Eli’s dream of being accepted with a simple “Hi.” Her words sparked connection, compassion, and a deeper understanding that EB stories matter everywhere they’re heard. Acceptance begins with awareness. Awareness
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We’re honored to share that Matter of Time was named Best Music Documentary Feature at the @nashfilmfest last month. Huge thanks to every family, partner, and supporter who helped bring this story to life. The journey’s just beginning… stay tuned, MORE is coming... 🎬💙
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Honored. Grateful. Unstoppable. 🦋 A few weeks ago, EB Research Partnership CEO Michael Hund was honored to join global leaders in healthcare, policy, and patient advocacy at the @milkeninstitute Future of Biomedical Research and Innovation convening in Washington, D.C. This
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Families who are affected by EB remind us daily what resilience looks like. Our job is to match that strength with science and action. That’s why we created The Effect, a community of people giving what they can, together fueling research that brings us closer to cures. Your
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At the Canadian premiere of Matter of Time at @ciffcalgary, EB families were at the center of it all, their strength, their stories, their hope. 🦋 That spirit was beautifully echoed by Kevin Drew and Broken Social Scene. Kevin spoke directly to families about the importance of
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If you read one story of strength today, let it be Mackenzie’s. A strong girl with a relentless, loving family. Sharing her story powers awareness for Epidermolysis Bullosa and fuels research so children and families like hers get better treatments, faster. 🎥 Find their
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When Jennifer Wood, a Specialist Dental Nurse at Great Ormond Street Hospital, first cared for a child with EB, she was struck not only by the fragility of their skin, but by the strength and resilience their family carried every day. She quickly saw that EB affects every part
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What a night at the Calgary International Film Festival @ciffcalgary for the Canadian premiere of Matter of Time. 🦋 We were honored to share this evening with EB families, some traveling long distances to be there. Your strength, stories, and presence made this night
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Tomorrow! Join our Sept Town Hall at 5 PM ET. We’ll spotlight D-Fi, a Phase 3 therapy using a patient’s own cells to heal DEB wounds. Hear from Dr. David Chu, Alicia Stewart-Smith, & EBRP’s Allison Bolshagettigan. RSVP 👉 https://t.co/vDbS8ALLQk
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Tomorrow! Join our Sept Town Hall at 5 PM ET. We’ll spotlight D-Fi, a Phase 3 therapy using a patient’s own cells to heal DEB wounds. Hear from Dr. David Chu, Alicia Stewart-Smith, & EBRP’s Allison Bolshagettigan. RSVP 👉 https://t.co/vDbS8ALLQk
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When Annie’s son Brooks was born with EB simplex, their journey turned into action. They launched a Plunge in Greensboro, rallied neighbors + EB families, and built a circle of support. “Being open to talking about EB… is the easiest and most effective thing we can do to
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Used Filsuvez (past or present)? Your experience can shape better EB treatments. EBRP + MedPanel are seeking U.S. adults with DEB/JEB or EB caregivers for a paid study. 60-min online interview, $150 compensation. U.S. adults with DEB or JEB and caregivers with Filsuvez
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INNOVATION: A first-of-its-kind eye drop therapy is in development for people with EB. Thanks to Eliksa Therapeutics, ELK-003 goes beyond artificial tears, it’s built from acellular amniotic fluid to directly target EB-related eye complications. This is pioneering science in
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The EB 2026 International Congress, the very first South American EB Congress, is coming to São Paulo, Brazil, January 20–22, 2026! 🌍 This historic gathering will unite researchers, clinicians, patients, families, and advocates from 50+ countries to advance EB care and
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It’s here. Our 2024 Impact Report. Because of you, we funded 18 research projects, awarded $5.6M in grants, and reached across 6 countries. Over 300 people joined our Town Halls to shape the future of care. 💙 Thanks to the generosity of two dedicated donors, 100% of your
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Mackenzie was born without skin on her legs, feet, and hand. Today, even the lightest touch can cause painful blisters. And yet she laughs, she smiles, she finds joy. Every day with EB is fragile. Every gift toward research brings us closer to stronger futures. đź’™ Donate to
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🚨🦋 Today is #InternationalDayofCharity. For families with EB, time matters and cures can’t wait. Every gift multiplies through our Venture Philanthropy model, funding research again & again until cures are found. Give today → https://t.co/ZFyI5VULPG
#HealEB
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From the floor of the @NYSE We rang the Opening Bell to spotlight Epidermolysis Bullosa (EB), a rare and life-threatening disease. CEO Michael Hund shared why curing EB matters, for families today and for the 400M people worldwide affected by rare diseases. Through our Venture
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