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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
@cureeb
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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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DAA little girl named Darcie, who lives with a rare disease called Junctional Epidermolysis Bullosa. This is her story🦋 #epidermolysisbullosa #rarediseaseawareness #rarediseaseday #fyp #EBawareness
@darcies_story001
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GRA little girl named Grace, who lives with a rare disease called Junctional Epidermolysis Bullosa. This is her story🦋 #epidermolysisbullosa #rarediseaseawareness #rarediseaseday #fyp #EBawareness
@grace_life002
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GRA little girl named Grace, who lives with a rare disease called Junctional Epidermolysis Bullosa. This is her story🦋 #epidermolysisbullosa #rarediseaseawareness #rarediseaseday #fyp #EBawareness
@grace_life002
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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
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GRIf Grace could sing you a song, this would just sum her up❤️ #epidermolysisbullosa #fyp #hospice #babytok #butterflybaby
@grace_life002
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DAHoping 2026 is nicer to Darcie Link in the bio please help #EpidermolysisBullosa #2026 #fyp #EBawareness #babytok
@darcies_story001
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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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