EB Research Partnership

A global story of urgency, love, and science, now ready for the world. Matter of Time is available to Netflix members everywhere on February 9.

During our Matter of Time Town Hall, Dr. Jeff Heddles made an extraordinary commitment to the EB community. He pledged to match every donation up to $1 million, helping accelerate research and bring us closer to more treatments and a cure. Thank you, Jeff, for helping rally this community. And a special thank you to Chris Ulmer of Special Books by Special Kids for moderating this conversation. 🦋 Your gift is DOUBLED right now, 100% going straight to research. Donate here: give.ebresearch.org/campaign/77405…

Thank you to @CBC's Q with Tom Power for spotlighting Matter of Time and the urgent work to cure Epidermolysis Bullosa (EB). This conversation captures what sits at the heart of the film... the powerful intersection of art, advocacy, science, and hope. Matter of Time is more than a documentary. It is a call to pay attention, to care deeply, and to support the work being done to change lives. Matter of Time is streaming on Netflix Learn more at ebresearch.org youtube.com/watch?v=WjvKgM…

How is technology helping advance EB research? Join EBRP’s March Town Hall to hear from Dr. Karl Koehler (@HarvardMed) and Dr. Erbil Abaci (@Columbia) on promising new approaches for tissue maturation, therapeutic screening, and treatment of complex EB wounds. 🦋 March 31 at 5 PM ET 🔗 RSVP: ebresearch.org/townhallrsvp #EB #EpidermolysisBullosa #RareDiseaseResearch

What gives researchers hope that a cure for EB is closer than ever? The science is there... gene editing, deeper disease understanding. But now something else is happening. After watching Matter of Time, young scientists are asking: “How can I help cure this?” That’s momentum. Join the race to cure EB 🦋 All donations are DOUBLED right now made possible by the generosity of Dr. Jeff Heddles. Donate: give.ebresearch.org/campaign/77405… Watch: youtube.com/watch?v=bUKk8A…

How do you tell a story this painful without losing hope? Producer Karen Barzilay shares how Matter of Time balances the reality of EB with the hope that already exists within the community. EB stories are not just about pain, they are about resilience, humor, love, and determination. 🎬 Matter of Time now streaming on Netflix 🦋 Watch the full moment at youtube.com/watch?v=bUKk8A…

Being named one of the best documentaries of 2026 by @Esquire means the world, because this story belongs to an extraordinary community. Watch the film. Share the story. Help us get to the cure. 🎬 Streaming now on Netflix 🦋 Learn more about EB and the film: matteroftimefilm.com

Rare Disease Day may be over. The work isn’t. 🌍 1 in 10 people live with a rare disease. ⚠️ 95% still have no FDA-approved treatment. In this conversation, we go beyond awareness to unpack the science behind curing Epidermolysis Bullosa (EB), from gene & cell therapies to the clinical trial pipeline, and how EBRP’s venture philanthropy model is accelerating progress. EB now has 3+ FDA-approved therapies. What works for EB can help unlock treatments for other rare diseases. Thank you @amanpour @CNN and @PBS for the conversation with EBRP CEO Michael Hund and Stanford EB researcher Dr. Jean Tang. 🎥 Watch: youtube.com/watch?v=muLKzQ…

A cure for EB changes everything. Right now, every donation is doubled thanks to a $1M match from Dr. Jeff Heddles. Help accelerate more treatments and a cure for Epidermolysis Bullosa. Because it’s not a matter of if. It’s a matter of time. 🦋 Double your donation: give.ebresearch.org/campaign/77405…

"Ultimately, this doc is a celebration of life. It’s a huge, unabashed standing ovation to the human spirit, and a show of camaraderie alongside a special group of young people." - californiaviner, Letterboxd Audiences are discovering the powerful story behind Matter of Time, a documentary about families living with Epidermolysis Bullosa (EB) and the global fight to cure it. 🎬 Watch Matter of Time on Netflix | netflix.com/title/82184383 🦋 Donate to accelerate more treatments and a cure | give.ebresearch.org/motmatch #matteroftime #epidermolysisbullosa #raredisease

Phoenix Children’s EB Clinic has been awarded a $25,000 EBCRC grant for the 2025–2026 cycle. This funding strengthens multidisciplinary care for children and families living with Epidermolysis Bullosa while advancing research collaboration across EBCRC sites. 🦋 The EB Clinical Research Consortium is funded by EB Research Partnership and the Epidermolysis Bullosa Medical Research Foundation to accelerate treatments and cures for EB.

One month ago, Matter of Time launched on @netflix and introduced the world to families living with Epidermolysis Bullosa (EB). Watch the film: 🎬 netflix.com/title/82184383 And right now every donation is DOUBLED during the Matter of Time $1M Match. 🦋 Help accelerate treatments and a cure: give.ebresearch.org/motmatch The credits may roll, but the mission continues.

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): matteroftimefilm.com 🦋 Learn how research is moving EB forward: ebresearch.org

On the Fly on the Wall podcast, our co-founder Eddie Vedder shared something special. Thanks to generous angel donors covering our operating costs, 100% of every donation goes directly to EB research. And right now, during the Matter of Time $1M Match, every gift is DOUBLED. 🦋 Help keep the momentum going → give.ebresearch.org/campaign/77405… #EBResearch #MatterOfTime

Thank you to Douglas Davidson and Elements of Madness for this thoughtful review of Matter of Time. The piece beautifully explores the film’s ‘three-pronged storytelling’, weaving together Eddie Vedder’s benefit concert, the lived experiences of families with EB, and the science driving progress toward treatments and a cure. Grateful for the care taken in highlighting the humanity, urgency, and hope behind this story. Read the review: elementsofmadness.com/2026/02/28/mot… 🦋 Matter of Time is now streaming on Netflix.

Plunge season has officially begun. ❄️🦋 Across four continents, thousands of supporters are stepping into icy water to help fund research and accelerate progress toward a cure for Epidermolysis Bullosa. What started as a small act of support for one little girl has become a global movement changing the future of EB. Follow @plungeforelodie on social media to keep up with all the Plunge festivities happening around the world! Join a plunge, start a fundraiser, or support the cause. 🔗 plungeforelodie.org

One of the quietest moments in Matter of Time is also one of the most unforgettable. Before Eddie Vedder's benefit concert, Deanna does Rowan’s makeup. For a few minutes, it isn’t about doctors or treatments or statistics. It’s just someone helping a young girl feel beautiful. A gentle sharing of confidence. Of artistry. Of identity. From one generation to the next. Moments like this stay with you. 🦋 Watch the full scene in Matter of Time, now streaming on Netflix. ebresearch.org | matteroftimefilm.com

Thank you @sternshow 🙏🏼🩷🦋

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: give.ebresearch.org/campaign/77405… #RareDisease #CureEB #MatterOfTime

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

Correction: Sunday, March 1 at 7:00 PM ET/ 4:00 PM PT Monday, March 2 at 8:00 AM ET/ 5:00 AM PT Tuesday, March 3 at 9:00 PM ET/ 6:00 PM PT

Tune in to Pearl Jam Radio (SiriusXM Ch. 22) 🎙️ David Fricke interviews Eddie Vedder and EBRP CEO Michael Hund about 'Matter of Time' and the mission of EB Research Partnership. 🦋 Listen here (SiriusXM subscription required): siriusxm.com/channels/pearl…