591
CUIn our second excerpt from our conversation with Ben & Claire, they talk about the challenges of living with #RDEB
#CureEB #ResearchtheCure #EpidermolysisBullosa
@cureeb
#Cureeb
世界中の人々によるCureebに関する件のリール動画を視聴。
ログインせずに匿名で視聴。
トレンドリール
(12)
634
CUOver the next week, we'll be sharing excerpts from a conversation with Ben & Claire - their son Luke has #RDEB
#CureEB #ResearchtheCure #EpidermolysisBullosa
@cureeb
727
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
608
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
388
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
511
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
1.2K
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
19.4K
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
317
DAHoping 2026 is nicer to Darcie Link in the bio please help #EpidermolysisBullosa #2026 #fyp #EBawareness #babytok
@darcies_story001
581.6K
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
✨ #Cureeb発見ガイド
Instagramには#Cureebの下にthousands of件の投稿があり、プラットフォームで最も活気のあるビジュアルエコシステムの1つを作り出しています。
Instagramの膨大な#Cureebコレクションには、今日最も魅力的な動画が掲載されています。@pearljam, @mackenzies_eb_journey and @cureebfoundationや他のクリエイティブなプロデューサーからのコンテンツは、世界中でthousands of件の投稿に達しました。
#Cureebで何がトレンドですか？最も視聴されたReels動画とバイラルコンテンツが上部に掲載されています。
人気カテゴリー
📹 ビデオトレンド: 最新のReelsとバイラル動画を発見
📈 ハッシュタグ戦略: コンテンツのトレンドハッシュタグオプションを探索
🌟 注目のクリエイター: @pearljam, @mackenzies_eb_journey, @cureebfoundationなどがコミュニティをリード
#Cureebについてのよくある質問
Pictameを使用すれば、Instagramにログインせずに#Cureebのすべてのリールと動画を閲覧できます。あなたの視聴活動は完全にプライベートです。ハッシュタグを検索して、トレンドコンテンツをすぐに探索開始できます。
パフォーマンス分析
12リールの分析
💡 トップ投稿は平均150.7K回の再生（平均の3.0倍）
週3-5回、活動時間に定期的に投稿
コンテンツ作成のヒントと戦略
🔥 #Cureebは高いエンゲージメント可能性を示す - ピーク時に戦略的に投稿
📹 #Cureebには高品質な縦型動画（9:16）が最適 - 良い照明とクリアな音声を使用
✍️ ストーリー性のある詳細なキャプションが効果的 - 平均長298文字
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