43.6K
DAGrab a cuppa and listen to Darcie chatting away🥰 #epidermolysisbullosa #darciesstory #ebawareness #butterflybaby
@darcies_story
#Ebawareness
Watch 77K Reels videos about Ebawareness from people all over the world.
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49.9K
LIBe kind. #RareDiseaseDay #epidermolysisbullosa #ebawareness #raredisease
@liztrinnear
254.9K
AB“There’s never going to be anybody like me.” #ListenUp
Dean Clifford @itsdeanclifford was told his rare skin condition would kill him by age five. Now decades later, he’s stronger than ever.
Stream Listen Up on ABC iview.
#EpidermolysisBullosa #EBAwareness #Health
@abchealth
33.0K
MAMeet Mackenzie 💗
She has a rare genetic disorder called Recessive Dystrophic Epidermolysis Bullosa (RDEB). This makes her skin extremely fragile, like the wings of a butterfly. We are determined to raise awareness for this cruel disorder, and hope that one day there will be a cure.
#epidermolysisbullosa #ebwarrior #butterflybaby #ebawareness #chronicillness #medicalmom #medicalmama #baby #findacure
@mackenzies_eb_journey
314
FI تخيل شكل حياتك لو تحوَّلَتْ أتفه ممارساتك اليومية إلى صراعٍ مؤلم. أبسط لمسة ممكن تجرحك؛ سواء من ملابسك أو كرسي المدرسة أو حتى الهواء، كل هذه الأشياء يتحوّل التعامل معها إلى عذاب يومي يتطلّب المواجهة! هذا ليس خيالًا، هذا ما يعيشه مصابو
مرض جلد الفراشة.
في هذه الحلقة من سلسلة «ثمانية أسئلة»، ضيفنا حمد بن طلال الشمري، أحد المصابين بهذا المرض. ستسمع منه كيف أثّر المرض في كل جوانب حياته، والصورة الخاطئة عن
المرض التي يود تغييرها.
Source:ثمانية
- #ButterflySkin
- #EpidermolysisBullosa
- #EBAwareness
- #RareDiseaseDay
- #SkinDiseaseAwareness
- #InvisibleIllness
- #ChronicIllness
- #LivingWithEB
- #EBWarrior
- #GeneticDisorder
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*💙
- #SupportEB
- #HopeForEB
- #EBCommunity
- #StrongerTogether
- #PatientStories
- #DisabilityAwareness
- #EmpathyMatters
- #BreakTheStigma
#تابعوني #شارك_المنشور_ليصل_للجميع
#followｍe #share
#spreadingawareness
@fibromyalgia.info
7.2K
PI🦋 La Piel de Mariposa puede generar otras muchas complicaciones, tan severas como los carcinomas de piel…
Un diagnóstico de cáncer, teniendo a su vez una enfermedad rara, genera mucho miedo e incertidumbre. Así lo vivió Itziar y su familia. Ante esta situación, Álvaro (enfermero) y el equipo psicológico de DEBRA, estuvieron a su lado para apoyarles en esos momentos tan complicados.
Tu donación es fundamental para contratar una enfermera que nos ayude a atender a más de 350 familias en España.
Dona desde el enlace de nuestro perfil ↗️
25.500€ = 1 enfermera
25€= 1 hora de enfermería
1.000 personas solidarias que donen 25€ = 350 hogares atendidos.
___
📸: @martin.corradini
🎥: @aledeluca____
#30AñosCuidando #PieldeMariposa #EpidermolisisBullosa #EnfermedadesRaras #DiaInternacionalPielDeMariposa #EBawareness #Enfermería #MiGranoDeArena
@pieldemariposa
3.1K
KOLooking after Kourtney was my world.
And when the world fell apart, I had to find new ways to hold her close.
Now, I pour that same love into every jar, every balm, every bottle.
This is still her story—I’m just telling it through healing hands. 🤍🌿
#kokoslegacy #grievingmom #skincarewithpurpose #medicalmomlife #griefandhealing #butterflychild #ebawareness #lovecontinues
@koko_shae
9.2K
WEHappy #MothersDay! debra of America honors the extraordinary moms of our Epidermolysis Bullosa Community. We celebrate their strength, resilience, and unbreakable spirit.
debra of America is the only U.S. nonprofit organization that helps families like Jackie’s by providing free supportive services that ease the daily burdens of EB, by funding groundbreaking research directed at symptom relief and a cure, and by advocating on behalf of the thousands living with this excruciating disease. It’s “because the cost of doing nothing is too great.”
❤️ Honor an EB mom by making a donation at debra.org/donate
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#HappyMothersDay #IncredibleMoms #EBawareness #EpidermolysisBullosa
@wefighteb
5.3K
AN#Repost from myself from 2018. I feel it’s my responsibility to share my story and raise #ebawareness. Please watch and click the hashtag to educate yourselves on this disease.
・・・
It’s not easy for me to speak about this. I just wanted to educate everyone on #EbAwareness on #Ebawareness week. Epidermolysis Bullosa is a rare genetic skin disease. 1 out of every 50 thousand babies can be born with it. There is no cure for EB. I lost my first son to it. So keep loving, keep fighting, keep hoping, keep praying. 🙏❤️ #RIPLeandre
@andresoukmma
261.7K
NAThis moment was incredible. ❤️
When @pearljam’s @eddievedder surprised @tsrsmoke in 2016, @nascar had a surprise of their own in store. #ebawareness
@nascaronusa
760
KEEddie and Jill Vedder didn’t just lend their names to a cause—they poured their energy, time, and hearts into it.
They’ve used their platforms to fight for change.
To fight for a cure for a disease most people haven’t even heard of.
They turned spotlight into action. Fame into funding.
And they’ve brought real hope to families living with EB.
They didn’t have to—but they chose to.
And that choice continues to make a difference.
Grateful doesn’t even begin to cover it.
#MatterOfTime #EBAwareness #ButterflySkin #FiercelyUnfiltered #GratitudeInAction
@kellyrenee1977
1.1K
DEReal stories matter. Not the polished ones, but the honest, lived-in ones.
At the Debra International Conference, we met young people from the @debra.youthcouncil Debra International Youth Council who reminded us why visibility matters. Because awareness doesn’t just happen. And for someone living with EB, being seen can be a lifeline.
In this video, a Paulina from Chile shares her story. She speaks about how seeing others like her — who understood her pain, her strength, her journey — changed everything. About how knowing you're not alone can change everything.
This is the power of peer support.
And while this is her story, it’s not just about Chile. It's about Ireland. It's about communities everywhere.
EB can be rare and deeply isolating. That’s why connection matters. That’s why we keep showing up — until everyone living with EB knows they are not alone. 🧡
#epidermolysisbullosa #supportmatters #raredisease #EBAwareness #community #EB #Debra
@debraireland
✨ #Ebawareness Discovery Guide
Instagram hosts 77K posts under #Ebawareness, creating one of the platform's most vibrant visual ecosystems. This massive collection represents trending moments, creative expressions, and global conversations happening right now.
Discover the latest #Ebawareness content without logging in. The most impressive reels under this tag, especially from @nascaronusa, @abchealth and @liztrinnear, are gaining massive attention. View them in HD quality and download to your device.
What's trending in #Ebawareness? The most watched Reels videos and viral content are featured above. Explore the gallery to discover creative storytelling, popular moments, and content that's capturing millions of views worldwide.
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📹 Video Trends: Discover the latest Reels and viral videos
📈 Hashtag Strategy: Explore trending hashtag options for your content
🌟 Featured Creators: @nascaronusa, @abchealth, @liztrinnear and others leading the community
FAQs About #Ebawareness
With Pictame, you can browse all #Ebawareness reels and videos without logging into Instagram. No account required and your activity remains private.
Content Performance Insights
Analysis of 12 reels
💡 Top performing posts average 152.5K views (2.7x above average). Moderate competition - consistent posting builds momentum.
Post consistently 3-5 times/week at times when your audience is most active
Content Creation Tips & Strategy
🔥 #Ebawareness shows high engagement potential - post strategically at peak times
✍️ Detailed captions with story work well - average caption length is 489 characters
✨ Many verified creators are active (83%) - study their content style for inspiration
📹 High-quality vertical videos (9:16) perform best for #Ebawareness - use good lighting and clear audio
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