EB Research Partnership @EBResearch Twitter profile

Pinned Tweet

EB Research Partnership

2 months

Honored to have our CEO @michaelphund share the stage, our mission and innovative business model with @FLOTUS and other change makers at #IMAGINENonprofit this week. 🙏🦋 Read more: @AWS_Nonprofits

First Lady Jill Biden discusses health and innovation at AWS IMAGINE: Nonprofit conference

The event gathered leaders and innovators to discuss how technology can positively impact healthcare and health research globally.

www.aboutamazon.com

Amazon Web Services

@awscloud

2 months

0

6

64

0

4

8

Last Seen Profiles

@hoffmang

@warunorirei

@TheOfficialKase

@kimsirinapa

@ownheit

@WarringtonRUFC

@PolarSummit

@RF71901898

@istrihipsex

@theanchorband

@TheSageKabuto

@yllgen

@BairdEvelyn2

@zarla_p

@IPRGYI

@DerBrabander

@dietpepsi

@nmu_tokyo

@_GoHardGirls

@PhillyTheBoss

@Scout20202

@RFZ23

@ThalesSantosSi3

@Leandrocnf1

@LinkedinBrasil

@artereplatinum

@Cryptoanalys23

@Evyrigueira

@davemalone6

@myselfontt

@noidelamel

@ICP_insider

@SugarBearMuzik

@kaizookxD

@scarlett_kiri

@KajalMatek

EB Research Partnership

@EBResearch

3 years

Hey @ElonMusk ! Thanks for inspiring @elongateog to use the power of #cryptocurrency for good. As this week's charity spotlight, #ELONGATE has shared our mission to #healEB with thousands of generous #crypto donors. We hope to see you Sunday 12pm ET for the Charity Party!

Donate Crypto for Life-Saving EB Research

ebresearch.org

220

732

2K

EB Research Partnership

@EBResearch

3 years

THANK YOU @elongateog for a generous $150,000 gift to launch our #CryptoForCures Fund! We aim to raise $1M in #cryptocurrency by the end of 2021 to fund groundbreaking #tech to accelerate a cure for EB! Join the fund by making a #crypto donation at

58

450

1K

EB Research Partnership

@EBResearch

3 years

According to @ChrisHemsworth , John Hudson is a true hero. He lives with the equivalent of 3rd degree burns all over his body due to Epidermolysis Bullosa (EB). Learn about our mission to #healEB at @elongateog 's Charity Party on Sunday at 12pm ET! Follow #ELONGATE for details 💫

64

324

1K

EB Research Partnership

@EBResearch

3 years

This week, we're @elongateog 's Charity Spotlight! We're co-hosting their Charity Party on Sunday 12PM ET. Tune in to learn more about our progress to cures and how #cryptocurrency donations can fuel research. Follow @elongateog for updates! Donate #crypto :

41

298

1K

EB Research Partnership

@EBResearch

3 years

The announcement you've all been waiting for ✨ Spider-Man & MJ have teamed up to #healEB . @Zendaya will join her #SpiderMan costar @tomholland1996 at #VentureIntoCures on Nov 18 at 8pm EST to raise awareness & funds to cure EB. Register to watch at 🦋💖

13

209

986

EB Research Partnership

@EBResearch

3 years

@elongateog We love #ELONGATE 's generous community of supporters. Together, we WILL #healEB 💖🦋

27

210

931

EB Research Partnership

@EBResearch

3 years

. @oliviarodrigo has generously donated this signed #Gibson guitar for auction to benefit #VentureIntoCures ! Bid now at through Dec 2 at 11:59 PM ET. All proceeds go directly to critical research to #healEB . Bid high and bid often!🦋💖

2

196

937

EB Research Partnership

@EBResearch

3 years

Announcing this year's host of #VentureIntoCures , @TomHolland1996 ! We are beyond excited to have #TomHolland and @BrothersTrustUK join us to host this year's digital stream on Nov 18 alongside courageous EB families and celebrity friends. RSVP at 🦋✨

7

182

914

EB Research Partnership

@EBResearch

3 years

Our friend @ThatGeekAaron spoke to @AdamSandler about how he doesn't let EB stop him. This week, we're co-hosting @elongateog 's Charity Party on Sunday at 12PM ET. Join us to learn more about our mission to #healEB and how #crypto can fuel life-saving research. #ELONGATE4CHARITY

30

237

835

EB Research Partnership

@EBResearch

3 years

We're co-hosting #ELONGATE 's Charity Party TODAY at 12pm ET! Follow @elongateog for details on how to join us. We'll discuss our innovative model to #healEB and find cures for all #raredisease , as explained here by #BradleyCooper , and how #crypto can power life-saving research.

50

236

816

EB Research Partnership

@EBResearch

3 years

Thank you @elongateog for highlighting our mission to #healEB ! Join us at the Charity Party this Sunday at 12PM ET 🦋✨

EG Token

@EG_Ecosystem

3 years

This week we're spotlighting @EBResearch , a charity that aims to cure Epidermolysis Bullosa by 2030 - and then cure even more. Learn More: Donate Crypto: Tune in Sunday 12PM Noon ET for our Charity Party, co-hosted with @EBResearch !

323

753

2K

30

194

760

EB Research Partnership

@EBResearch

3 years

HUGE thank you to @TomHolland1996 for hosting #VentureintoCures 2021!!! We are eternally grateful. See you next year!! ❤️🦋❤️🦋

20

183

710

EB Research Partnership

@EBResearch

3 years

Thank you @elongateog for donating $150K as the Founding Member of our #CryptoForCures Fund! We want to raise $1M in #cryptocurrency this year for innovative research to #healEB by 2030. Donate #Crypto : Learn more: #ELONGATE 💖🦋

30

203

669

EB Research Partnership

@EBResearch

3 years

"Curing EB is not an if, it's a when," says EBRP Co-Founder Eddie Vedder. EBRP is accepting #crypto donations at . This week, we're @ElongateOG 's charity spotlight and are co-hosting their Charity Party Sunday at 12pm ET. #ELONGATE4CHARITY #ElongateToken

26

181

654

EB Research Partnership

@EBResearch

3 years

“It’s about the most insane skin disorder you can imagine. And when you realize it also affects the internal organs, then you see it as diabolical,” says EBRP Co-Founder Eddie Vedder. Join us at @elongateog 's Charity Party TOMORROW at 12PM ET to learn how #crypto can power cures.

Donate #Crypto to #HealEB

ebresearch.org

27

140

603

EB Research Partnership

@EBResearch

3 years

Join us and these familiar faces on 11/18 at 8pm ET for a digital event to raise awareness and funds to treat and cure EB. We'll enjoy musical performances, heartfelt stories & more as we work together to #healEB . Sign up for the free show at 🦋✨

8

154

619

EB Research Partnership

@EBResearch

2 years

Hey @oliviarodrigo fans, wouldn't it be BRUTAL to miss out on seeing her at our #VentureintoCures virtual event this Sunday? We're on a mission to #HealEB and you can get involved! 🦋❤️ RSVP at

Olivia Rodrigo to Join Venture into Cures on Nov. 20th at 4PM EST

brandlive.com

20

132

615

EB Research Partnership

@EBResearch

3 years

Join our #CryptoForCures Fund by donating #crypto to accelerate innovative research on #geneediting , stem cell therapies & more to cure EB by 2030. Thanks to @elongateog for launching the fund with a $150K gift. Let's get to $1M in #cryptocurrency by the end of the year!

Join the #CryptoForCures Fund

ebresearch.org

22

129

538

EB Research Partnership

@EBResearch

3 years

ICYMI: @TomHolland1996 is the host of #VentureIntoCures on Nov 18! Along with the @BrothersTrustUK , Tom joins EBRP Co-Founders Jill & #EddieVedder to discover treatments and a cure for EB. Stay tuned for a full lineup announcement this week 👀 RSVP at ✨🦋

7

130

548

EB Research Partnership

@EBResearch

3 years

$2,250,000 & counting to #HealEB 🦋✨ Thank you to everyone who donated or simply took the time to watch #VentureIntoCures for joining us to advance our mission to #healEB together. You can join our fight against EB by donating to critical research at 💖

20

149

521

EB Research Partnership

@EBResearch

3 years

. @TomHolland1996 passes the mic to @zendaya so she can introduce you to a real-life superhero. Join us, let's #HealEB !

0

75

530

EB Research Partnership

@EBResearch

3 years

. @TomHolland1996 and @jillvedder77 talk about how we can all #HealEB . Tune into #VentureintoCures now to learn more, see live performances and get involved! ❤️🦋

2

122

511

EB Research Partnership

@EBResearch

3 years

We're so excited for tomorrow! #VentureIntoCures with us and our friends @tomholland1996 @tbrotherstrust , @zendaya , @jimjefferies , @jonasbrothers , #MartinShort , @jackblack , @GonzotheGreat , @selenagomez , @edsheeran , and many more. RSVP to watch at 🦋💖

3

131

492

EB Research Partnership

@EBResearch

3 years

#WednesdayWisdom from @billieeilish - "Different is great. So, embrace it, and love you for you." Billie made a guest appearance at our #VentureIntoCures event last fall to raise awareness and funds to help #healEB . Check out the full show at 🦋✨

24

111

450

EB Research Partnership

@EBResearch

3 years

"This would be a triumph for science" - Dr. Tang of @StanfordMed to @JimmyKimmel on our mission to #healEB . Join us TOMORROW at 12PM ET for #ELONGATE 's Charity Party to learn how #cryptocurrency can fuel innovative #research for cures. Follow @elongateog for details 🧬✨

17

111

438

EB Research Partnership

@EBResearch

3 years

"The more people we get on board, the more understanding we have of this disease, the stronger chance we have of curing it," says our #VentureIntoCures host #TomHolland . Look behind the scenes to learn how @TBrothersTrust got involved with EBRP's mission to #healEB 🎬🦋✨

3

110

435

EB Research Partnership

@EBResearch

3 years

. @selenagomez knows firsthand how scary and lonely it can be to face an illness. Soon on #VentureintoCures Selena will help us share the story of Mary who is living with EB. Tune in now.

4

93

368

EB Research Partnership

@EBResearch

7 years

#Eddie Vedder & @NASCAR honor @TonyStewart with a $1.8Million Donation to us! #grateful #healEB #causethewave

Pearl Jam's Eddie Vedder surprises Tony Stewart at NASCAR Awards

The Pearl Jam singer and the retiring driver became fast friends earlier this year.

www.usatoday.com

10

107

335

EB Research Partnership

@EBResearch

3 years

Uplifting stories, comedic acts, musical performances & more! #VentureIntoCures on Nov. 18 at 8pm ET will raise awareness & funds to find a cure for EB. Join us & #SelenaGomez , #PeteDavidson & many more with surprises to come! RSVP for the free show: 🦋✨

5

76

317

EB Research Partnership

@EBResearch

3 years

OMG!!! We're LIVE with @TomHolland1996 ! Tune in at RIGHT NOW! We'll see you there 💖🥳🦋🥂✨

0

54

300

EB Research Partnership

@EBResearch

3 years

Thank you to our #VentureIntoCures Title Sponsors, @elongateog , @awscloud , Jenny Gallagher, and Lawrence Neubauer 💖🦋 2/10

18

84

284

EB Research Partnership

@EBResearch

3 years

#VentureIntoCures is just 3 days away! Join our host, @tomholland1996 , and @thebrotherstrust at the free digital show on Nov. 18th to raise awareness and funds for life-saving research to find treatments and a cure for EB. Register to watch at 🦋✨

1

88

294

EB Research Partnership

@EBResearch

3 years

Co-Founder @jillvedder77 and Harper Vedder are quite the mother-daughter duo. Tune in now – we still have some performances up our sleeve!

0

64

297

EB Research Partnership

@EBResearch

2 years

What makes a superhero? According to @Zendaya : 1. A fighting spirit 2. Courage in the face of adversity 3. The will to make the world a better place. 🦸‍♀️ #EBsuperhero Novelette found a higher purpose in her poetry, inspiring others to find their voice.

2

35

283

EB Research Partnership

@EBResearch

4 years

#EddieVedder & @btaylor of @salesforce discuss how @pearljam & @ebresearch are #LeadingThroughChange . Watch the full interview () & don't forget to RSVP to #VentureintoCures on Nov. 18th at 8PM EST! .

8

36

281

EB Research Partnership

@EBResearch

3 years

To celebrate our partnership, @elongateog committed $50,000 in #cryptocurrency matching funds to #healEB ! Every dollar in #crypto donated will be DOUBLED by #ELONGATE through #GivingTuesday . Click below to donate! We accept #bitcoin #ethereum & more with @thegivingblock 🚀 🦋

Donate to the Crypto Match!

ebresearch.org

10

76

246

EB Research Partnership

@EBResearch

3 years

#SelenaGomez will be joining us at the #VentureIntoCures digital show on November 18! We're thrilled to have @selenagomez 's support in our mission to #healEB . Have you registered yet? RSVP to join us LIVE 👉 🦋✨

5

74

246

EB Research Partnership

@EBResearch

3 years

Each night, parents like Fernando spend hours that should be quality time popping blisters, administering ointment, and bandaging wounds. Let's give them those hours back. Make a gift to fund the research necessary to find a cure. Donate now at 🦋💖

2

61

250

EB Research Partnership

@EBResearch

3 years

Welcome to our new followers from the @elongateog community! Togther, we will #healEB 🦋💕

EG Token

@EG_Ecosystem

3 years

100K followers on Twitter?? Thanks to the entire #ELONGATECOMMUNITY for all the support and love. ❤️Every single one of you should follow @EBResearch !

89

575

3K

3

43

247

EB Research Partnership

@EBResearch

3 years

THANK YOU @DeployStarship ! We are grateful for your support of our mission to #healEB . All #cryptocurrency donations support #CryptoForCures , our #crypto fund founded by @elongateog to accelerate cures for EB and all of #raredisease . So thankful for our generous partners 🦋💖

EG Token

@EG_Ecosystem

3 years

We put up $50K in matching funds to help @ebresearch cure a rare disease... and @deploystarship are blasting in with ANOTHER $50K!! And they are helping us fundraise even more! THANK YOU! Tune in to Venture Into Cures on Nov 18 and help us #HealEB !

41

188

485

5

60

233

EB Research Partnership

@EBResearch

3 years

Our partner #ELONGATE helped found the #CryptoForCures fund to advance life-saving EB research. Their support & leadership has engaged the #crypto community with our mission to #healEB . Big thanks to @elongateog @Bitboy_Crypto @Pluto_Alliance @NFT_Justin @deezy_BTC 🦋✨

EG Token

@EG_Ecosystem

3 years

MASSIVE thank you to @NFT_Justin @Bitboy_Crypto @Pluto_Alliance @deezy_BTC for donating $20K from their #DeployStarship pack sale to the #CryptoForCures Fund! With their support we're going to help @ebresearch #healEB by 2030! Tune into #ventureintocures w/ Tom Holland on Nov 18!

47

170

486

9

71

232

EB Research Partnership

@EBResearch

3 years

All the #VentureIntoCures details you need to watch the show tonight! Pre-show @ 7:30pm EST with @liztrinnear . Show @ 8pm EST with @TomHolland1996 . Streaming on & EBRP, #EddieVedder , @PearlJam Facebook & YouTube, @elongateog YouTube, & @awscloud Twitch ✨

3

59

229

EB Research Partnership

@EBResearch

2 years

We're on a mission to cure EB, and it's funding not science that's slowing us down. Proud to have @TomHolland1996 and the @Tbrotherstrust on our team. Let's #HealEB !!! Donate now at #VentureintoCures

1

75

229

EB Research Partnership

@EBResearch

3 years

Kick off #EBAwarenessWeek with us & @elongateog on #TheBalancingAct airing on #LifetimeTV tomorrow at 7:30am ET/PT! Together, EBRP & #ELONGATE are leveraging #cryptocurrency for good with our #CryptoForCures Fund to advance therapies to #healEB 🦋✨ @BalancingActTV @lifetimetv

11

55

193

EB Research Partnership

@EBResearch

3 years

#ELONGATE is a Title Sponsor of #VentureIntoCures on November 18! We're so grateful for their continued support of our mission to #healEB 🦋 RSVP and learn more about the event at ✨

EG Token

@EG_Ecosystem

3 years

Announcing #VentureIntoCures , an @EBResearch event with surprise celebrity host! Title Sponsor: ELONGATE! Tune in on Nov 18 to #healEB by 2030!

25

95

381

2

44

191

EB Research Partnership

@EBResearch

3 years

Coming up next – @SofiaCarson will help tell the story of fearless fighter Lylah Scott and how we can all #HealEB . ❤️❤️❤️

3

45

191

EB Research Partnership

@EBResearch

4 years

Happy Birthday EBRP Co-Founder #EddieVedder of @PearlJam ! His love for the EB community & dedication to find treatments & cures has amplified our mission worldwide, raising awareness & funds to #healEB . Thank you for your relentless support.🎉🦋❤🤘 #CauseTheWave #ComeSayHi

0

16

210

EB Research Partnership

@EBResearch

3 years

Ever-inspired by all of those living with EB. Thank you to @selenagomez for helping tell Mary Haddad's story.

1

71

183

EB Research Partnership

@EBResearch

2 years

"The power of art to heal and inspire is undeniable," says #KeanuReeves on #VentureintoCures . He's helping us tell the story of @DeannaMolinaro , an artist living with RDEB. Tune in now:

12

30

173

EB Research Partnership

@EBResearch

3 years

The @jonasbrothers know #EBisNoJoke , but to spread some awareness they want you to share your bad jokes using the hashtag #EBisNoJoke . #VentureintoCures #HealEB

1

61

165

EB Research Partnership

@EBResearch

3 years

SURPRISE ANNOUNCEMENT! @kristenanniebell will be joining us at #VentureIntoCures in 45 short minutes! So grateful to have #KristenBell on the team that will #healEB . Make sure you tune in LIVE at or on our Facebook and YouTube channels 🦋✨

0

37

146

EB Research Partnership

@EBResearch

3 years

Live now: @TomHolland1996 calls in his friend @GonzotheGreat to celebrate some of the brave kids living with EB.

1

47

155

EB Research Partnership

@EBResearch

3 years

"I do my best to show Salim strength and bravery, even though he is far stronger and braver than I will ever be," writes Laura, #EBSuperhero Salim's mom. Kids with EB are the bravest people we know. Donate to #healEB so they can just be kids instead: 🦋❤️

2

32

149

EB Research Partnership

@EBResearch

3 years

We're a Finalist in the NYC Imagine Awards! Help us win $3,000 by voting for us in the Fan Favorite competition. You can vote daily through 9/20 at this link:

NYC Imagine Awards

@ImagineAwardNYC

3 years

Our Fan Favorite Vote is Now LIVE, vote DAILY! Make a difference in our Cerini and Associates Fan Favorite Vote! The finalist with the most votes will be recognized and awarded $3,000 during the our LIVE event on 10/19 at the Edison Ballroom. Vote here:

0

1

12

49

143

EB Research Partnership

@EBResearch

3 years

Want a shot at winning this @Munk_One screen printed #VentureIntoCures poster signed by #EddieVedder ? Go All In For A Cure at our annual digital poker tournament on 7/14 powered by @pokerstars . Purchase your ticket (or one for dad for #FathersDay ) at

2

31

154

EB Research Partnership

@EBResearch

3 years

Since 2010, we have funded more than 90 research projects to #healEB , impacting the landscape by increasing the number of #clinicaltrials in EB from just 2 then to over 30 today. Join @elongateog and support our #CryptoForCures Fund to support innovative research for a cure ✨🦋

Research Funded ⬆️ Clinical Trials ⬆️

ebresearch.org

4

36

142

EB Research Partnership

@EBResearch

3 years

“We need a treatment, we need a cure for children like my daughter,” says Kate, #EBSuperhero Rowan’s mom. The biggest barrier to finding that #cure isn’t science - it’s funding. You can help bridge that gap. Make a donation to critical EB research at 🦋🧬

Life with EB: Rowan's Story

ebresearch.org

3

33

126

EB Research Partnership

@EBResearch

3 years

Thanks to our awesome partners @elongateog , #Brisbane lit up with our colors and signature butterfly to raise #EBAwareness and funds for #CryptoForCures , our #cryptocurrency fund that #ELONGATE helped found. Donate to the fund at . Let's #healEB ! 💖🦋

EG Token

@EG_Ecosystem

3 years

In celebration of our partnership with @EBResearch , we are LIGHTING UP #BRISBANE ! #ELONGATE is proud to be the founding member of the #CryptoForCures Fund! Let's help them #cureEB , and get the Fund to $1M by the end of the year!

18

135

517

2

43

115

EB Research Partnership

@EBResearch

3 years

A special thank you from Eddie Vedder on behalf of the EB Community. Thank you to all of our guests, donors, friends, viewers – we are eternally grateful! #HealEB

2

20

127

EB Research Partnership

@EBResearch

10 years

Big news for EB Research: http://t.co/vmZdZTJ1iK #EBPartner #EddieVedder #Microsoft #HealEB http://t.co/766URpEnJ7

2

51

121

EB Research Partnership

@EBResearch

3 years

Guess who!? The first 5 people to guess this year's #VentureIntoCures host will win EBRP merch! Submit your guess at by 10/25 ✨🦋⁠ ⁠ HINT: You may think of this person as a superhero, but they think the true superheroes are people living with EB 💪⁠

8

25

100

EB Research Partnership

@EBResearch

2 years

At #VentureIntoCures , @tomholland1996 & @tbrotherstrust introduced us to Oliver, a young man with EB who has sadly passed away. We are fiercely committed to finding a cure in honor of Oliver & all others battling this disorder. We will further Oliver’s legacy. We will #healEB 🦋

2

38

109

EB Research Partnership

@EBResearch

2 years

✨SPECIAL ANNOUNCEMENT ✨We’re adding a little magic 🪄 to #VentureintoCures . @EmmaWatson is joining the party!!! Could our lineup get any better? Stay tuned for more 👀

1

27

103

EB Research Partnership

@EBResearch

3 years

We've seen a lot of incredible celebs tonight, but now it's time to hear from the biggest stars - the EB Community! Let's #HealEB !

0

28

96

EB Research Partnership

@EBResearch

3 years

As a member of @HarvardHBS 's Kraft Precision Medicine Accelerator, we recognize that "driving cures requires serious capital." Our #VenturePhilanthropy model is an innovative method to raise the significant funds needed to accelerate cures for EB and all #raredisease 🦋✨🧬

How EBRP Invests in a Cure

hbs.edu

0

15

91

EB Research Partnership

@EBResearch

3 years

Have you heard? We're thrilled to announce @edsheeran @selenagomez @jonasbrothers and many more will be joining us on Nov 18 at 8pm for #VentureIntoCures ! Check out the full lineup via @THR at . Register to watch the show at 🦋✨

2

32

86

EB Research Partnership

@EBResearch

8 years

A fun story about #AFJ told by our own board member @katelaurielee . Eddie Vedder of @PearlJam at our live auction

Eddie Vedder and the Chicago Cubs Team Up to Raise $50,000 to Help Kids with EB

The seventh game of the World Series was memorable for many reasons: It was the bitter end of the historic match-up between the…

medium.com

1

34

86

EB Research Partnership

@EBResearch

3 years

Our friend #EdSheeran will be perfoming tonight at #VentureIntoCures ! The show starts at 8pm EST to help advance our mission to #healEB . Make sure you're registered to join us, @edsheeran , and many more by visiting . We'll see you soon! 🦋💖

0

13

73

EB Research Partnership

@EBResearch

5 years

On August 9th Eli and #EddieVedder of @PearlJam are inviting the world to #ComeSayHi 👋during the #WEDay special on @ABCNetwork . @WEMovement

#ComeSayHi with Eli & Eddie Vedder

ebresearch.org

4

28

70

EB Research Partnership

@EBResearch

1 month

Huge congrats to our co-founder @eddievedder and the entire @PearlJam team 👏👏👏👏

Pearl Jam

@PearlJam

1 month

Dark Matter is finally here. Listen now:

362

1K

5K

0

3

71

EB Research Partnership

@EBResearch

8 years

Epic Night at @PearlJam NYC concert. Thanks for sharing your night with us!

5

18

66

EB Research Partnership

@EBResearch

3 years

Talent Update 🚨 @SofiaCarson will join us at #VentureIntoCures to spread awareness & raise funds for critical treatments & a cure for EB! So thankful to have #SofiaCarson on the team that WILL #healEB . Stay tuned for surprises & RSVP for the show at 🦋✨

2

23

63

EB Research Partnership

@EBResearch

3 years

@elongateog @awscloud @TomHolland1996 @selenagomez @jackblack We are SO excited!!! Thank you for your continued support. We couldn't be more grateful to have #Elongate 's partnership as we work together to cure EB. See you tonight! 💖🦋

1

24

57

EB Research Partnership

@EBResearch

5 years

Happy Birthday to our Co-Founder Eddie Vedder! Thank you for all that you and Jill do to join us in accelerating life-saving treatments and cures for EB. #HealEB

0

12

63

EB Research Partnership

@EBResearch

3 years

"Mary is so much more than the rare disease. Mary is a rare human" says @SelenaGomez . Join us at #VentureIntoCures on 11/18 at 8pm EST to hear #SelenaGomez share Mary's story about life with EB & finding beauty in her uniqueness. Register to watch at 💖🦋

0

16

59

EB Research Partnership

@EBResearch

3 years

The domino effect explained by Lily Hevesh on #VentureintoCures . Let's be part of the domino effect and work together to #HealEB !

1

21

62

EB Research Partnership

@EBResearch

5 years

Rock4EB! was an unforgettable evening with #EddieVedder , @AdamSandler , and @JuddApatow that raised over $900,000 for life-saving #EBResearch . Thank you to all who supported this fantastic event that benefited ours and @ebmrf 's efforts to #healEB 🦋✨❤️

Eddie Vedder, Adam Sandler, and Judd Apatow at Rock4EB!

latimes.com

2

17

62

EB Research Partnership

@EBResearch

3 years

We're about to go LIVE on Instagram with @TomHolland1996 ! Head over to the @instagram app to check out the conversation with #TomHolland , EBRP CEO @MichaelPHund , and EB Ambassador @AuthorLucyBeall to get excited about tonight's #VentureIntoCures show.

0

12

58

EB Research Partnership

@EBResearch

3 months

Welcome to the EB family Post 💕💕💕

Post Malone

@PostMalone

3 months

thank you @eddievedder @EBResearch 💕

71

366

7K

1

5

59

EB Research Partnership

@EBResearch

4 years

Our Co-Founders Jill and #EddieVedder are truly altruistic and compassionate people. We're so proud and grateful for their leadership in our mission to #healEB . 🦋💖

Pearl Jam

@PearlJam

4 years

Tonight, Eddie will join other musicians on @GlblCtzn 's One World: #TogetherAtHome event. This global broadcast honors the healthcare workers in the fight against the COVID-19 pandemic. Check your local listings and tune in for this special event:

44

372

2K

0

4

60

EB Research Partnership

@EBResearch

3 years

We kicked off #EBAwarenessWeek with our partners @elongateog on The @BalancingActTV airing on @LifetimeTV . Check out the segment to learn about EB with #EBSuperhero Brady and EBRP's #CryptoForCures fund founded by #ELONGATE , which supports innovative research to power cures.

3

18

52

EB Research Partnership

@EBResearch

3 years

@selenagomez BEYOND grateful for your support of our mission to #healEB 💖🦋 Thank you for shining a light on the EB community and sharing how we can all work together to find a cure ✨

0

9

56

EB Research Partnership

@EBResearch

5 years

Wishing our incredible Co-Founder and Vice Chairman, @jillvedder77 , the loveliest of birthdays. Her passion has led us to innovate, inspire, & forge the path ahead to put an end to EB. Thank you for your constant enthusiasm & encouragement. With your leadership, we will #healEB .

3

4

55

EB Research Partnership

@EBResearch

2 years

Our friend @TomHolland1996 enlisted @Hevesh5 to explain the domino effect to #healEB and the 7,000 other #rarediseases that affect 400M people worldwide. In honor of #RareDiseaseDay on 2/28, become a domino in the chain by joining The Effect, our monthly giving club 🦋

0

12

51

EB Research Partnership

@EBResearch

4 years

Want to match with our Co-Founder #EddieVedder & support a great cause? Purchase a @HOMAGE #ComeSayHi tee today! Proceeds benefit life-saving research to #healEB . Help spread Eli and Lily's message of inclusivity & purchase yours at

0

14

54

EB Research Partnership

@EBResearch

3 years

@elongateog @NFT_Justin @Bitboy_Crypto @Pluto_Alliance @deezy_BTC This is amazing! Thank you all for joining #CryptoForCures and advancing our shared mission to #healEB 🦋✨

0

8

51

EB Research Partnership

@EBResearch

3 years

Listen up! @charlottelawr is LIVE on #VenutreintoCures right now! 🥳🎶

3

14

54

EB Research Partnership

@EBResearch

4 years

Until you meet someone with EB, their pain can be hard to understand. EB Research Partnership Co-founder Eddie Vedder explains what life is like with Epidermolysis Bullosa (EB) and why, with your help, we can #HealEB forever. Head to to learn more.

How We Can #HealEB

ebresearch.org

1

18

55

EB Research Partnership

@EBResearch

4 years

"When you see the intense pain that these kids go through, the baths and the bandages, it’s about as hard a thing to watch as anything I’ve ever witnessed in my life," says EBRP Co-Founder #EddieVedder . Learn more about the Vedders' fight to #healEB at .

0

14

55

EB Research Partnership

@EBResearch

3 years

Don's miss @GatenM123 narrating Jackson's epic tale, (Ad)Venture Into Cures!

1

19

54

EB Research Partnership

@EBResearch

3 years

Time is life. Our #Venture Philanthropy model gives all donations to EBRP the potential to grow, accelerating the path to #healEB . This week, @elongateog helped launch our #CryptoForCures Fund, aiming to raise $1M in #crypto this year. Join the fund at

5

24

50

EB Research Partnership

@EBResearch

1 year

Our co-founder @eddievedder Reportin' for Duty to honor Leslie Jordan. Leslie was not only committed to acting, comedy & country music, but also to helping others & making every one feel loved. ❤️ All proceeds from the event went to EBRP. HUGE thank you to everyone involved 🙏

0

2

54

EB Research Partnership

@EBResearch

3 years

@elongateog We can’t thank you enough for this generous gift to #healEB ! Grateful to have #ELONGATE on the team that will find a cure 🦋❤️

1

18

51

EB Research Partnership

@EBResearch

5 years

. @PearlJam 's #EddieVedder and EB advocates talk about what this #raredisease means on a daily basis and how we can find a cure fast. #HealEB

Life with EB | Finding a Cure ft. Eddie Vedder

ebresearch.org

0

13

53

EB Research Partnership

@EBResearch

2 years

#VentureintoCures is heating up 🔥🔥🔥 Give a big welcome to @macklemore and #KeanuReeves by dropping some emojis below 🔥🦋💥 We’re so excited to share stories from the EB community on Sunday. ❤️ RSVP at

11

9

51

EB Research Partnership

@EBResearch

3 years

Our Senior Accountant Michelle Hall lives with EB. She joined @elongateog 's Charity Party on Sunday to educate the generous #ELONGATE community about the disorder and EBRP's mission to find a cure. Join the #CryptoForCures Fund to acclerate EB research: 🦋