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#Ebresearch Reel by @pearljam (verified account) - Today is #RareDiseaseDay Rowan lives with Epidermolysis Bullosa (EB), a rare genetic disease that makes skin as fragile as a butterfly's wings, but h
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@pearljam
Today 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
#Ebresearch Reel by @professor_dedee_murrell - 28th February 2026 is International Rare Disease Day. Did you know that there are over 6000 rare diseases and that they encompass 12% of all chronic i
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@professor_dedee_murrell
28th February 2026 is International Rare Disease Day. Did you know that there are over 6000 rare diseases and that they encompass 12% of all chronic illnesses? Most of us know or have met someone with a rare disease- genetic, autoimmune, cancer. Unlike common diseases, where there are many experts and treatment options, people with rare diseases usually have no approved treatments or very few; they are penalised because funding goes to common conditions- heart disease, cancers etc. I specialise in rare genetic and autoimmune blistering diseases: #epidermolysisbullosa #pemphigus #pemphigoid & founded the @australian_blistering_dz_fdn 20 years ago - there will be a fundraising dinner event in Sydney to celebrate in August- to support research into causes and better treatments for these rare conditions. Here you see some of the research papers from important outcome measures that our global team of rare skin disease experts have produced that are now in clinical trials if newly approved treatments. Next week I am volunteering on a Global EB Taskforce organised by DebRA UK in London to brainstorm about planning for the next decade of priorities to allow people living with EB all over the world to access clinical trials and new therapies. There will be sessions on these rare diseases at AAD, EADV and the Rare Skin Diseases conference in Versailles, France in July and IPPF pemphigus autoimmune blistering diseases conference in late September in Lubeck, Germany. To support and follow this work see www.blisters.org.au #rarediseaseday
#Ebresearch Reel by @mackenzies_eb_journey - Mackenzie has Epidermolysis Bullosa (EB), a rare disease that affects approximately 200 children born in the US each year. Her form of EB accounts f
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@mackenzies_eb_journey
Mackenzie 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
#Ebresearch Reel by @boombroadcast - A hug should feel like safety. Soft. Warm. Healing. For kids like Rowan, who live with Epidermolysis Bullosa (EB), hugs can hurt. EB is a rare gen
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@boombroadcast
A hug should feel like safety. Soft. Warm. Healing. For kids like Rowan, who live with Epidermolysis Bullosa (EB), hugs can hurt. EB is a rare genetic skin disorder where skin is as fragile as a butterfly’s wings. That’s why children and adults with EB are often called “butterfly children.” EB is heartbreaking — and right now, there is no cure. EB Research Partnership (EBRP) funds cutting-edge research to find actual cures. And the same science that moves us closer to curing EB could help unlock treatments for hundreds of other rare diseases. Watch their latest #publicserviceannouncement, featuring Rowan and Eddie Vedder, #ECRP co-founder, and learn how you can help drive this research forward. https://www.ebresearch.org/ #EBResearchPartnership #ButterflyChildren #RareDiseaseAwareness
#Ebresearch Reel by @grace_life002 - A little girl named Grace, who lives with a rare disease called Junctional Epidermolysis Bullosa. This is her story🦋 #epidermolysisbullosa #raredisea
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@grace_life002
A little girl named Grace, who lives with a rare disease called Junctional Epidermolysis Bullosa. This is her story🦋 #epidermolysisbullosa #rarediseaseawareness #rarediseaseday #fyp #EBawareness
#Ebresearch Reel by @ellianasarmy - February is Rare Disease Month, but EB affects families for a lifetime🦋 1 in 10 people live with a rare disease, with EB being one of the rarest-aff
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@ellianasarmy
February is Rare Disease Month, but EB affects families for a lifetime🦋 1 in 10 people live with a rare disease, with EB being one of the rarest—affecting 1 in every 20,000 births worldwide. For us, this is more than just a month—it’s a mission. We are fighting for awareness, for better care, and for a cure. Thank you for being part of Elliana’s Army💕 #RareDiseaseMonth #ShowYourStripes #EBAwareness #EpidermolysisBullosa #RareDiseaseAwareness
#Ebresearch Reel by @cureeb - A message from Sohana about #RareDiseaseDay #CureEB #ResearchtheCure #EpidermolysisBullosa
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@cureeb
A message from Sohana about #RareDiseaseDay #CureEB #ResearchtheCure #EpidermolysisBullosa
#Ebresearch Reel by @amanpourcopbs - On Rare Disease Day, Dr. Jean Tang talks about the life-threatening and rare genetic skin disease Epidermolysis Bullosa - subject of a new documentary
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@amanpourcopbs
On Rare Disease Day, Dr. Jean Tang talks about the life-threatening and rare genetic skin disease Epidermolysis Bullosa — subject of a new documentary “Matter of Time.” #Amanpour #AmanpourPBS #pbs
#Ebresearch Reel by @darcies_story001 - A little girl named Darcie, who lives with a rare disease called Junctional Epidermolysis Bullosa. This is her story🦋 #epidermolysisbullosa #raredise
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@darcies_story001
A little girl named Darcie, who lives with a rare disease called Junctional Epidermolysis Bullosa. This is her story🦋 #epidermolysisbullosa #rarediseaseawareness #rarediseaseday #fyp #EBawareness
#Ebresearch Reel by @eddievedder (verified account) - Rare doesn't mean few. It means millions of lives and a race against time. What starts with one rare disease becomes a story shaped by music, communi
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@eddievedder
Rare doesn’t mean few. It means millions of lives and a race against time. What starts with one rare disease becomes a story shaped by music, community, and hope. A story of people refusing to wait, moving what once felt impossible closer to reality... a cure, starting with Epidermolysis Bullosa, the Butterfly Disease, where skin can be as fragile as a butterfly’s wings. Watch Matter of Time, now streaming on Netflix. Link in bio.
#Ebresearch Reel by @stanford.med (verified account) - Even the gentlest touch can be painful for people living with epidermolysis bullosa, a condition often described as one of the most devastating geneti
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@stanford.med
Even the gentlest touch can be painful for people living with epidermolysis bullosa, a condition often described as one of the most devastating genetic diseases. In an episode from the new season of the Health Compass podcast, host @dr.maya.adam speaks with Jean Tang, MD, PhD, about advances in understanding EB — and how research is bringing new hope to patients and families. 🎧 Listen to the full episode of Health Compass. Link in bio. #RareDisease #StanfordMedicine #HealthCompass #MedicalResearch

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