EB Research Partnership funds research aimed at treating and curing Epidermolysis Bullosa (EB). 🦋 #HealEB 🔬 Find a cure
New York, NY
Joined June 2013
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EB Research Partnership retweeted
This week is EB Awareness Week!
October 25–31 is a time to come together and raise awareness for epidermolysis bullosa (EB), a group of rare genetic skin disorders that cause extremely fragile skin and painful blistering.
For the children, adults, and families living with EB, awareness matters. So does the research bringing us closer to more treatments and, ultimately, a cure.
We're proud to support @EBResearch and the incredible EB community this week.
If you're able, consider making a gift to help move EB research forward.
For more information, visit ebresearch.org
#EBAwarenessWeek #EpidermolysisBullosa
EB Research Partnership retweeted
Who better to lead a conversation on the next decade of #RareDisease innovation and impact than @CNBC’s @BeckyQuick?
Co-anchor of @SquawkCNBC," host of #CNBCCures, and the parent of a child living with a rare disease, Becky brings a unique perspective to the #NORDSummit. Her extensive experience interviewing some of the world’s most influential business leaders is matched by a deeply personal understanding of the urgent need for more treatments and improved care for people living with #RareDiseases and their families.
On October 26, she’ll bring those perspectives together as she moderates a critical conversation with four CEOs on the innovation, investment, challenges, and opportunities that will shape the future of rare disease.
Be part of the conversation. Register to join us in Washington, D.C., or virtually today: nordsummit.org
ALT A promotional graphic for the NORD Breakthrough Summit, held October 25-27 in Washington, D.C. It announces "The Next Decade of Rare Disease: A CEO Leadership Dialogue," moderated by Becky Quick, co-anchor of CNBC's "Squawk Box" and host of "CNBC Cures."
EB Research Partnership retweeted
Today on NYSE Live:
Peter Tuchman, @EinsteinoWallSt
Michael Hund, Rare Ventures
Itamar Apelblat, @TheTokenSec
Tune in 9am ET. nitter.cf/i/broadcasts/1qGvveBNd…
EB Research Partnership retweeted
Rare Ventures, backed by the Richard King Mellon Foundation and Eddie Vedder, rang the NYSE opening bell to launch its rare disease treatment platform in Pittsburgh. bizjournals.com/pittsburgh/n…
EB Research Partnership retweeted
Rare Ventures CEO Michael Hund discusses venture philanthropy for rare diseases & using AI to connect treatments and clinicians: cnb.cx/4xOWI67
EB Research Partnership retweeted
The Richard King Mellon Foundation is investing $25 million in Rare Ventures, a Pittsburgh-based platform co-founded by Pearl Jam's Eddie Vedder to accelerate rare disease treatment development. bizjournals.com/pittsburgh/n…
EB Research Partnership retweeted
Leaders from CMU and Rare Ventures joined members of the rare disease community to ring the opening bell at the @NYSE.
The milestone comes about a month after CMU joined Rare Ventures as a founding partner in the initiative which aims to transform therapies for rare diseases.
EB Research Partnership retweeted
The NYSE welcomes Rare Ventures to celebrate its kind venture philanthropy platform designed to accelerate treatments and cures for rare diseases.
(NYSE: NLY) | @EBResearch
EB Research Partnership retweeted
More than 400 million people live with a rare disease, yet about 95% of them don’t have an approved treatment. CMU wants to change that.
CMU is a founding partner in Rare Ventures™, a first-of-its kind platform for accelerating rare disease therapies.
cmu.edu/news/stories/archive…
EB Research Partnership retweeted
A massive thank you to the @Mariners and @Padres for playing in support of @EBResearch! Every Vedder Cup game helps raise awareness for Epidermolysis Bullosa (EB) and fund research for a cure. From the players to the fans and everyone showing up to the ball field – thank you!
EB Research Partnership retweeted
Congrats to the Padres who won the 2026 @VedderCup. The real winner was @EBResearch
EB Research Partnership retweeted
Meanwhile, Michael Hund of @EBResearch illustrated how investments in development of therapies for #EpidermolysisBullosa yield significant revenue that they then direct towards new research. 2/3
EB Research Partnership retweeted
Eddie sits down with Michael Hund, CEO of @EBResearch, and journalist, David Fricke, to talk about the making of "Matter of Time" and Pearl Jam's efforts in activism over the years.
Listen to “Matter of Time: Eddie Vedder & Michael Hund” on @SIRIUSXM's @PJRadio (Ch. 22) or stream the special in the app: sxm.app.link/PearlJamRadio
EB Research Partnership retweeted
Eddie reflects on the early days of Pearl Jam and their rise in Seattle's music scene on @flyonthewallpod with @danacarvey & @DavidSpade.
Hear their full conversation: pj.lnk.to/FOTWxEddie2026TP
EB Research Partnership retweeted
If you want to cry on an airplane, I highly suggest @netflix @netflix @EBResearch Matter of Time. Unimaginable the pain the children and families go through and their resilience to find a cure.
EB Research Partnership retweeted
¿Ya viste «Cuestión de tiempo» en Netflix?
SE LOS RECOMIENDO A 1000%. Me conmovió mucho el valor, residencia, esfuerzo, power de los niños y sus familias y el trabajo de todo el equipo de @EBResearch 👏🏼👏🏼👏🏼👏🏼👏🏼.
netflix.com/es/title/8218438…
EB Research Partnership retweeted
Rare doesn’t mean few. It means millions of lives and a race against time. What starts with one disease becomes a story of music, community, and hope. Matter of Time follows the fight for a cure, beginning with Epidermolysis Bullosa.
Now on Netflix: EddieVedder.lnk.to/MatterOfT…
EB Research Partnership retweeted
10 Movies Coming to Netflix in February 2026 That You Won't Want to Miss cnet.com/tech/services-and-s… @CNET @EBResearch @eddievedder @netflix @Netflix_CA
