Top Tweets for #EBResearch
Nagoya signed Eddie Vedder poster by @oliverbarrett for @EBResearch @eddievedder #Nagoya #Japan #Poster #EddieVedder #EBResearch

Eddie Vedder turns solo vulnerability into a powerful plea in Netflix’s ‘Matter of Time’ @eddievedder @EBResearch @seattletimes @netflix @NetflixPL #MatterOfTime #EBResearch https://t.co/JFkh3BiNbK
Eddie Vedder and his wife, Jill, have become involved in the fight to find a cure for a rare genetic disease. If you're going to use your popularity for good, this is how you do it. @eddievedder @EBResearch #MatterOfTime #EddieVedder #EBResearch
https://t.co/PlEn3R85EA
UNITED: From Sydney to Seattle, EB families led the way. 🦋
We were proud to stand with them and grateful to the @gwsgiants, @padres, @mariners & every fan whose support lifts families across oceans. 💙
#HealEB #EBResearch #RareDisease

What started as a playful fan nickname is now an official West Coast rivalry, and it’s bigger than baseball.
⚾ Round 2 is coming up Aug 25–27 at T-Mobile Park.
Learn more → https://t.co/gVCPlt8iGC
#VedderCup #EBResearch @Mariners @Padres @MLB

HAPPENING: Patients, partners, and advocates joined us to ring the Opening Bell at the @NYSE yesterday.
From Wall Street to every home impacted by EB, this moment shines a spotlight on the urgent need for research and the unstoppable hope for cures. 💙🦋
#EBResearch #VentureIntoCures
“Really all we can do is speak out.” — Shane DiGiovanna 🗣
July’s powerful Town Hall on rare disease advocacy is now on YouTube. 🎥
Don’t miss Shane + Rep. Landsman’s moving conversation.
📺 Watch: https://t.co/FVfEX1E2hJ
🗓 Next: Aug 19 — Get EB Active
#HealEB #EBResearch #RareDisease
Courage met care on the red carpet.
10-year-old Rowan walked alongside her doctor, Dr. Jamie Feinstein—reminding us how close we are to a cure, and why we can't stop now.
🦋 https://t.co/BnvHU7bhOc
#HealEB #MatterOfTimeFilm #EBResearch

Brooklyn was born with junctional EB. Her journey hasn’t been easy—but her strength is undeniable.
“She’s a warrior,” says her mom, Morgan. “And I’ve learned I am too.” 💗
Support EB research and help fund a cure: https://t.co/CzZhJdegwn
#EBResearch #HealEB

865 voices. 55 countries. 1 global roadmap for EB research, shaped by patients, families & care teams.
Swipe through to see the top priorities of those who live with EB
🦋 Donate at https://t.co/j33cb7RNC7
#EBResearch

We’re proud to share our 2025 Research Report — showing how your support is driving #EBresearch that brings real hope, improves lives, and ensures the voice of the #EB community is at the heart of the research process.
🔗Read here: https://t.co/LVOSfw2yjE
#HealthResearchMatters

You did this, Graham’s Gang! 💙 $61,355.35 is going to EB research because of you! Thank you for believing in a cure. Let’s keep going! Donate at https://t.co/9l1JcCOybC
#GratefulForGraham #EBResearch

We hit our $250K match! 💙 Thanks to Dr. Jeff Heddles' incredible generosity, and every supporter who showed up, we're one step closer to curing EB. Let’s keep going. Donate now: https://t.co/tYJOnWhSnP
#HealEB #EBResearch

2,355 miles in 32 days, he made it to the Continental Divide. 💪 After biking cross-country to raise awareness for those with EB, Rich Parnell has raised $11,577.05 of his $20K goal. Help him go the distance: donate now at https://t.co/JoQM7PTok5 💙🦋 #HealEB #EBResearch

From film to FDA approval 🎬
At the Matter of Time Tribeca panel, Dr. Jean Tang shared that Stanford’s gene therapy for recessive dystrophic EB is now FDA approved, a breakthrough powered by patients & donors. 🦋
Help us keep going: https://t.co/T4MeCO1T7z
#HealEB #EBResearch
If you or a loved one lives with #epidermolysisbullosa in Ireland, joining the #EBRegistry is a powerful way to support #EBresearch and advance #EBcare.
Learn more👉https://t.co/mjIQ3Bmgz1
@SkinRegs @cuttyla #EB #registries #HealthResearchMatters

In 2024, the global #epidermolysisbullosa community spoke — and now we have the top #EBresearch priorities, chosen by the #EBcommunity, for the #EBcommunity. @CharityDEBRA
📝Read the report 👉https://t.co/veC46NvD0b
👇See the top topics from both #livedexperience & #HCPs:

We’re excited to share the final reports on the #EB Priority Setting Partnership (#PSP) — a global effort to identify what matters most in #EBresearch, shaped by people living with EB, families & clinicians.
👉https://t.co/veC46NvD0b
#HealthResearchMatters #JLA @CharityDEBRA

Matt Finlin & Karen Barzilay on “Matter Of Time,” Tribeca, Eddie Vedder, Broken Social Scene & EB @eddievedder @EBResearch #EddieVedder #EBResearch #MatterOfTime #TribecaFilm https://t.co/zII1LmYfLY
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