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CUIn our second excerpt from our conversation with Ben & Claire, they talk about the challenges of living with #RDEB
#CureEB #ResearchtheCure #EpidermolysisBullosa
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CUOver the next week, we'll be sharing excerpts from a conversation with Ben & Claire - their son Luke has #RDEB
#CureEB #ResearchtheCure #EpidermolysisBullosa
@cureeb
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CUA message from Sohana about #RareDiseaseDay
#CureEB #ResearchtheCure #EpidermolysisBullosa
@cureeb
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SHWe are helping to spread the word about this incredibly generous match. Thank you, Dr. Jeff Heddles! 🦋
#repost @ebresearch & @matteroftimefilm
A cure for Epidermolysis Bullosa changes everything.
Right now, your impact goes twice as far.
Every donation is doubled thanks to a $1,000,000 Match from Dr. Jeff Heddles, helping accelerate more treatments and a cure for EB.
Because for families living with EB, it’s not a matter of if. It’s a matter of time.
🦋 Double your donation today.
#matteroftime #raredisease #ebresearch
@shinemakerfoundation
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CUExciting updates from BDF! ✨
Cure EB Foundation took the stage to share the latest progress on the research projects we’ve funded thanks to your donations. Every contribution is helping drive vital research forward and bringing us closer to better treatments—and ultimately a cure—for Epidermolysis Bullosa (EB).
Thank you to our board member Ash Thompson for sharing all the updates and Tilly for your inspiring words! Thank you for being part of this journey and supporting the EB community. 💙
#CureEBFoundation #EpidermolysisBullosa #EBResearch #ebawareness #BeatEB
@cureebfoundation
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MAMackenzie has Epidermolysis Bullosa (EB), a rare disease that affects approximately 200 children born in the US each year.
Her form of EB accounts for ~25% of all EB cases. Her life is rare.
As we prepare for Rare Disease Day, we wanted to highlight some of what Mackenzie’s rare life looks like. Filled to the brim with wound care, appointments, medications, therapies.
She is a fighter. She works so hard to reach her milestones, keep up with her sisters, achieve what she wants.
This rare disease brings on a rare strength, one that you have to see to believe. She’s incredible, and I’m forever in awe of her resilience.
#raredisease #parenting #baby #awareness #medicalmom
@mackenzies_eb_journey
585.8K
PEToday is #RareDiseaseDay
Rowan lives with Epidermolysis Bullosa (EB), a rare genetic disease that makes skin as fragile as a butterfly’s wings, but her courage isn’t rare, and neither is the global community of 400+ million people living with rare diseases.
Through @ebresearch, families, scientists, and supporters are pushing research forward, pioneering progress in EB and helping reshape what’s possible for rare diseases.
It’s not a matter of if.
It’s a matter of time.
🦋 Learn about EB and how you can help at ebresearch.org
@matteroftimefilm
@pearljam
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EBRare Disease Day may be over. The work isn’t.
1 in 10 people worldwide live with a rare disease, yet 95% still have no FDA-approved treatment.
This conversation goes deeper than awareness. It breaks down the science behind curing Epidermolysis Bullosa (EB), from gene and cell therapies to the clinical trial pipeline, and explains how EBRP’s venture philanthropy model is accelerating progress.
By funding research strategically, backing the most promising therapies early, and helping drive them toward FDA approval, we’re showing what’s possible.
EB is now one of the rare diseases with 3+ FDA-approved therapies, and what works for EB can work for other rare diseases.
Thank you @amanpourcopbs @CNN and @PBS for sitting down with EBRP CEO Michael Hund and leading Stanford EB researcher and clinician Dr. Jean Tang.
🎥 Watch the full segment on YouTube
@ebresearch
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