Advancing #RareDisease research starts with #ResearchFunding strategies built for small populations and complex pathways. Hear how collaboration is driving progress at the #NORDSymposium. Grab your tickets at https://t.co/CeWGgwt15j.
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: https://t.co/ZCiJrVHXhi
From @PearlJam Radio on SiriusXM (Ch. 22), @eddievedder + EBRP CEO Michael Hund joined David Fricke to talk Matter of Time, activism & real momentum in EB research.
EB is solvable, with the right funds. And what we’re building here can reshape what’s possible for 10,000+ rare diseases affecting 400M people, 95% with no treatment.
🎧 Listen on the SiriusXM app
🦋 $1M Match happening now, every gift doubled, crypto accepted: https://t.co/rTs0mCyl2i
#RareDisease #CureEB #MatterOfTime
Deanna Molinaro was a force, an artist, a mentor, and a reminder that life is measured in quality, not quantity.
In Matter of Time, we get a glimpse of how she met EB with grit, humor, and heart, turning pain into art, and showing up for others with a kind of courage that doesn’t ask for permission. Her story is a testament to the power of community, and to why progress matters for the next generation.
Thank you @Amanpour@CNN and @PBS for sitting down with EBRP CEO Michael Hund and leading Stanford EB researcher and clinician Dr. Jean Tang, and for helping more people meet Deanna through this film.
Explore Deanna’s story (and the film): https://t.co/3I5sKeNvRq 🦋
Learn how research is moving EB forward: https://t.co/MtNfibuQzM
Thomas DiPalma lives with Epidermolysis Bullosa (EB) often called “the butterfly disease” 🦋 for the fragility of the skin.
In this conversation, EBRP CEO Michael Hund breaks down what EB is and why it brings both urgency and hope.
Grateful to @NYSE & Ashley Mastronardi for helping shine a light on this story.
Awareness drives action. Action drives cures.
Learn more: https://t.co/MtNfibuQzM #EpidermolysisBullosa #RareDisease
BREAKING TODAY: EB families stood on the floor of the @NYSE this morning as we rang the Opening Bell 🦋
This moment wasn’t just symbolic, it was a powerful call for visibility, urgency, and hope in the fight against EB.
Together, we’re turning awareness into action and pushing closer to cures.
Photo Creds: New York Stock Exchange
More photos to come!
#NYSE #EBResearch
LIVE on NYSE TV 🎙️ @SPGMarketIntel - @SPGlobal talks new AI-powered solution. @GoDaddy survey shows 72% of small biz owners see sales rising.
Plus, hear from @MichaelPHund of @EBResearch on raising $75M to help cure Epidermolysis Bullosa. https://t.co/hAk17UHO69
The NYSE welcomes @ebresearch to celebrate three FDA-approved treatments for EB in the pursuit of a cure, honoring the EB community, and marking the theatrical release of the Matter of Time documentary film. https://t.co/3CS3QXii7K
Congratulations to our fearless leader, @MichaelPHund, on being awarded the Top CEO of the Year in Medical Research by International Association of Top Professionals (IAOTP) for his outstanding leadership, dedication, and commitment to the healthcare industry. 🏆
From all of us that know and work with Michael on a daily basis, we could not ask for a more committed, empowering, and visionary leader to guide our efforts to help achieve new progress in treating EB and working to find a cure.
Read more about this prestigious award from the IAOTP here! 👉https://t.co/1MUz9qAIA5
Congrats Michael! 👏💙🦋
#HealEB #CureEB #EBResearch
🙏💙🦋 EBRP #12DaysofGratitude | DAY 1 🎄✨
Welcome to our 12 Days of Gratitude! As we reflect on 2024, we’re filled with appreciation for this incredible community driving toward our bold mission to accelerate treatments and a cure for EB. Together, we’re creating a butterfly effect that will transform the lives of those impacted by EB and 10,000+ other rare diseases.
We’re so thankful for the brilliant medical experts working tirelessly to find a cure, our visionary Board and Co-Founders - @eddievedder and @jillvedder77 - for their leadership, our generous supporters for fueling this journey, and the courageous families facing EB who inspire us every single day. 💙
Let’s celebrate the progress we’ve made and the hope we share for the future! See more about our #12DaysOfGratitude at https://t.co/FpOpwHBMsP
@MichaelPHund
For EB Awareness Week we are showing our support by shining a light on the three incredible EB charities we work with; @EBResearch@CureEBorg and @CharityDEBRA . We also want to take the time to remember some incredible friends we have made along the way and the legacy they have left behind. #ebawarenessweek2024
EB Research Partnership co-founders Eddie Vedder & Jill Vedder share how inspired they are by the EB community. There is remarkable momentum being made on our journey to find a cure for EB – and beyond.
This #GivingTuesday, your gift can create a monumental impact - thanks to a incredible match from a generous donor, every donation up to $250,000 will be DOUBLED!
Every dollar raised supports life-saving research for Epidermolysis Bullosa and helps drive meaningful change for the entire rare disease community. Donate, fundraise, or share this video to help us create a butterfly effect of hope and progress.
✨ Donate now: https://t.co/ASf9KWcjiF
#GivingTuesday #CureEB #EBResearch #WingsOfChange
Our CEO @MichaelPHund was featured in the @Yale_Ventures#Startup Speaker Series. In the session he discussed the principles that guide his personal and professional life and the principles of our #VenturePhilanthropy model that drive impact at EBRP. https://t.co/kyEec9wIxA
Our CEO, @MichaelPHund , recently engaged with the @YaleSOM community during the @Yale_Ventures#Startup Speaker Series. He discusses the #VenturePhilanthropy model we use to drive meaningful progress in curing Epidermolysis Bullosa. Read more here: https://t.co/z8M2rCFl10
.@MichaelPHund, CEO of @EBResearch & @YaleSOM ’18, recently spoke to the @Yale community to discuss his journey as a mission-driven entrepreneur and the innovative #VenturePhilanthropy model driving impact impact at EBRP.
Read the full recap: https://t.co/hdUWagdw0G
CEO of EBRP & @YaleSOM grad, @MichaelPHund, will join the @Yale_Ventures Startup Speaker Series tomorrow to discuss his journey as a mission driven entrepreneur & the innovative #VenturePhilanthropy model we use to drive impact at EBRP. 🦋⚡️ RSVP here: https://t.co/BKa9yzctZG
Thank you to former German President & First Lady, Horst & Eva Luise Köhler, for inviting our CEO @MichaelPHund to keynote their Eva Luise and Horst Köhler Foundation for People with Rare Diseases #RareDisease Symposium in Berlin. It was a phenomenal 2 days of "Rethinking Rare".
Our LeadersLink mentors are crucial to our program's success by providing expertise and feedback to the program participants. Mentors generously volunteer their time to guide our participants. We are thrilled to have an incredible group of mentors for the 2024-25 cohort!