EB Research Partnership
@EBResearch

EB Research Partnership funds research aimed at treating and curing Epidermolysis Bullosa (EB). 🦋 #HealEB 🔬 Find a cure

 New York, NY
ebresearch.org
Joined June 2013
1,199 Photos and videos
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.
Matter of Time documentary on Netflix, premiering February 9. A powerful rare disease film following families living with Epidermolysis Bullosa, researchers racing toward treatments, and Eddie Vedder’s benefit concert supporting EB research.

ALT Matter of Time documentary on Netflix, premiering February 9. A powerful rare disease film following families living with Epidermolysis Bullosa, researchers racing toward treatments, and Eddie Vedder’s benefit concert supporting EB research.

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ZEVASKYN® (prademagene zamikeracel), an FDA-approved gene-modified cellular sheet therapy, is now available at University of Florida Health (UF Health). 📍 ZEVASKYN was approved by the FDA in April 2025 📍 To see a list of additional ZEVASKYN Qualified Treatment Centers that are now accepting patients, visit zevaskyn.com/treatment-cente… 📍 Patient support is available through Abeona Assist® at abeonaassist.com Connect with people who have been treated with ZEVASKYN, and their caregivers, through the Strong Together Network™ at 1-888-782-4042 💡Learn more at ZEVASKYN.com
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Pain and itch in EB are not just symptoms. They are signals. This Pain Awareness Month, we’re spotlighting EBRP-funded research led by Amy Paller, MD, at Northwestern University. Her team is studying how chronic wounds may activate a loop between the skin, nerves, and immune system, keeping pain and itch “turned on” even beyond visible wounds. This research is also exploring the body’s own pain-regulating system, called the endocannabinoid system, as a possible path toward safer, non-opioid relief for people living with EB. By better understanding what drives EB pain and itch, Dr. Paller’s team hopes to move closer to treatment options that are more targeted and built for daily life. 🦋 Donate today and join The Effect → give.ebresearch.org/campaign… #PainAwarenessMonth
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What began as a new way to fund EB research has become a model for what can come next. Tomorrow @EBResearch CEO and Rare Ventures Co-Founder Michael Hund will take the stage at the @GlobalGenes RARE Drug Development Symposium. 🦋 Tune in: globalgenes.org/rdds-2026/ra…
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EB Research Partnership retweeted
NYSE 🏛
@NYSE
Sep 4
Today on NYSE Live: Peter Tuchman, @EinsteinoWallSt Michael Hund, Rare Ventures Itamar Apelblat, @TheTokenSec Tune in 9am ET. nitter.net/i/broadcasts/1qGvveBNd…

NYSE 🏛

Today on NYSE Live | Annaly Capital Rings NYSE Opening Bell to Mark New Rare Ventures’ Initiative
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EB Research Partnership retweeted
Pittsburgh Business Times@PghBizTimes
Sep 5
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…

Rare Ventures rings NYSE opening less than month after launch

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
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EB Research Partnership retweeted
Squawk Box
@SquawkCNBC
Aug 19
Rare Ventures CEO Michael Hund discusses venture philanthropy for rare diseases & using AI to connect treatments and clinicians: cnb.cx/4xOWI67
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EB Research Partnership retweeted
Pittsburgh Business Times@PghBizTimes
Aug 12
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…

Richard King Mellon Foundation invests $25M in rare disease venture backed by Pearl Jam's Eddie...

The Richard King Mellon Foundation invests $25 million in Rare Ventures, a Pittsburgh-based platform co-founded by Eddie Vedder to accelerate rare disease treatment development.

bizjournals.com
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EB Research Partnership retweeted
Carnegie Mellon University
@CarnegieMellon
Sep 4
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.
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EB Research Partnership retweeted
NYSE 🏛
@NYSE
Sep 4
The NYSE welcomes Rare Ventures to celebrate its kind venture philanthropy platform designed to accelerate treatments and cures for rare diseases. (NYSE: NLY) | @EBResearch
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Epidermolysis Bullosa (EB) is a rare genetic skin disease, but EB does not look the same for everyone. There are four main types of EB: Epidermolysis Bullosa Simplex (EBS), Junctional Epidermolysis Bullosa (JEB), Dystrophic Epidermolysis Bullosa (DEB), and Kindler Syndrome (KS). Each affects the skin differently and can range widely in severity. EB Research Partnership funds research aimed at understanding the biology behind EB, advancing promising therapies, and moving treatments and therapies from the lab toward people who need them, and ultimately, a cure. 🦋 Donate to accelerate EB research today: give.ebresearch.org/give/335…
The image illustrates Epidermolysis Bullosa Simplex (EBS). It shows a diagram of the skin layers labeled "Epidermis," "Epidermal Junction," and "Dermis." Text explains that symptoms range from mild to severe, with blisters forming on the epidermis, commonly on hands and feet. Pink blurred shapes serve as a background.

ALT The image illustrates Epidermolysis Bullosa Simplex (EBS). It shows a diagram of the skin layers labeled "Epidermis," "Epidermal Junction," and "Dermis." Text explains that symptoms range from mild to severe, with blisters forming on the epidermis, commonly on hands and feet. Pink blurred shapes serve as a background.

Diagram illustrating Junctional Epidermolysis Bullosa (JEB). Includes a cross-section of skin layers: epidermis, epidermal junction, and dermis. Text explains that JEB causes blisters between the epidermis and dermis, affecting skin and internal linings. Describes two types: Generalized Intermediate and Generalized Severe, noting the severity and possible fatality in infancy. Background has pink, out-of-focus areas.

ALT Diagram illustrating Junctional Epidermolysis Bullosa (JEB). Includes a cross-section of skin layers: epidermis, epidermal junction, and dermis. Text explains that JEB causes blisters between the epidermis and dermis, affecting skin and internal linings. Describes two types: Generalized Intermediate and Generalized Severe, noting the severity and possible fatality in infancy. Background has pink, out-of-focus areas.

Diagram explaining Dystrophic Epidermolysis Bullosa (DEB). It includes a cross-section of skin layers labeled "epidermis," "epidermal junction," and "dermis" with text describing symptoms and types of DEB: dominant and recessive. Pink abstract shapes surround the diagram.

ALT Diagram explaining Dystrophic Epidermolysis Bullosa (DEB). It includes a cross-section of skin layers labeled "epidermis," "epidermal junction," and "dermis" with text describing symptoms and types of DEB: dominant and recessive. Pink abstract shapes surround the diagram.

Diagram illustrating the layers of skin: epidermis, epidermal junction, and dermis, with text explaining Kindler Syndrome (KS). Describes it as a rare type of epidermolysis bullosa (EB) where skin can sunburn easily, blisters form on any skin layer and internal organs, and there's an increased risk of squamous cell carcinoma in the mouth.

ALT Diagram illustrating the layers of skin: epidermis, epidermal junction, and dermis, with text explaining Kindler Syndrome (KS). Describes it as a rare type of epidermolysis bullosa (EB) where skin can sunburn easily, blisters form on any skin layer and internal organs, and there's an increased risk of squamous cell carcinoma in the mouth.
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September is Pain Awareness Month. 🩷 For people living with Epidermolysis Bullosa (EB), pain can begin at birth. EB causes fragile skin, wounds, and pain from minor friction. Awareness builds understanding. Research changes the future. 🦋 Join The Effect: ebresearch.org/donate
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EB Research Partnership retweeted
Carnegie Mellon University
@CarnegieMellon
Aug 12
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…

Rare Ventures, a First-of-its-kind Platform for Accelerating Rare Disease Therapies, Launches in...

Carnegie Mellon University is a founding partner in a Pittsburgh-based partnership that brings together leaders in medicine, biotechnology and artificial intelligence to speed the development of...

cmu.edu
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100 days until #VentureIntoCures 2026. 🦋 Join us Nov. 11 at Pier Sixty in NYC for a powerful evening supporting treatments and cures for Epidermolysis Bullosa. Tickets + sponsorships: ebresearch.org/vic2026.html?… EB families receive complimentary seating: info@ebresearch.org
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Today is National Parent's Day. 💙 We honor the ones who love the hardest, showing up for every bandage change, every hard night, every small victory. To every parent raising a child with EB or living with it themselves: your love doesn't quit, and neither does our mission. 🦋 ebresearch.org/donate
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ZEVASKYN® (prademagene zamikeracel), an FDA-approved gene-modified cellular sheet therapy, is now available at Cincinnati Children's. 📍ZEVASKYN was approved by the FDA in April 2025 📍To see a list of additional ZEVASKYN Qualified Treatment Centers that are now accepting patients, visit zevaskyn.com/treatment-cente… 📍Patient support is available through Abeona Assist® at abeonaassist.com 📍Connect with people who have been treated with ZEVASKYN, and their caregivers, through the Strong Together Network™ at 1-888-782-4042 💡 Learn more at ZEVASKYN.com
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People living with EB Simplex still have zero approved treatments. One week from today, EBRP hosts a Town Hall on life with EB Simplex and the science working to close the gaps in care. We'll hear from Dr. Jose Ayuso of the University of Wisconsin, whose lab uses human-derived skin organoids to evaluate new genome editing therapies; and from Thomas DiPalma and his parents Marie and Jared, who will share what life with EB Simplex looks like today. 🦋 Monday, July 27 at 5 PM ET 🔗 RSVP at the link in our bio.
"Closing the gap for EB Simplex" hosted by "(EB) RP". The flyer includes details about a July Town Hall meeting, focusing on advancements in EB Simplex care and genome editing therapies. It mentions the date, July 27, time, 5 PM ET, and includes an RSVP option. A "Meet our speakers" button is present, with abstract pink molecule designs in the background.

ALT "Closing the gap for EB Simplex" hosted by "(EB) RP". The flyer includes details about a July Town Hall meeting, focusing on advancements in EB Simplex care and genome editing therapies. It mentions the date, July 27, time, 5 PM ET, and includes an RSVP option. A "Meet our speakers" button is present, with abstract pink molecule designs in the background.
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For people living with Epidermolysis Bullosa (EB), access is care. Wound care supplies. Pain support. Safe places to play. Accessible spaces. Doctors who understand EB. This Disability Pride Month, we’re raising funds for EB research moving us closer to treatments and cures. 100% funds research. Donate: bit.ly/4wha1M0 #DisabilityPrideMonth #EpidermolysisBullosa #EBResearch
Disability Pride Month, featuring the words "Access is Care" highlighted. It includes icons and text: "Safe Play" with a slide, "Pain Support" with people icons, "Doctors Who Understand EB" with a stethoscope, "Accessible Spaces" with a wheelchair, and "Wound Care Supplies" with bandages. The text at the bottom emphasizes access for the EB community.

ALT Disability Pride Month, featuring the words "Access is Care" highlighted. It includes icons and text: "Safe Play" with a slide, "Pain Support" with people icons, "Doctors Who Understand EB" with a stethoscope, "Accessible Spaces" with a wheelchair, and "Wound Care Supplies" with bandages. The text at the bottom emphasizes access for the EB community.

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James was born with Kindler EB, making his skin fragile and highly sensitive to the sun. Last weekend, a hamstring injury hit at kilometre 4. He kept going anyway, finishing 30th out of 1,500 runners. That’s unstoppable. Donate to fund EB research: give.ebresearch.org/campaign… #UnstoppableSummerEB
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What if your own cells could become the treatment? 🧬 For people living with recessive dystrophic epidermolysis bullosa (RDEB), fragile skin makes healing a constant challenge. This project is developing a personalized stem cell therapy that starts with a patient's own skin cells. Scientists correct the genetic mutation, transform those cells into stem cells, and then generate healthy skin cells designed for transplantation. 🏅 EBRP awarded $392,977 to this project as part of our 2025 research cycle. Help move EB research forward → donate today at ebresearch.org.
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July is Disability Pride Month. 🦋 For the EB community, disability can touch so many parts of daily life. Wound care, pain, heat, mobility, school, work, and access to care. The Disability Pride flag honors the many experiences within the disability community, including physical, invisible, sensory, emotional, and intellectual disabilities, as well as those lost to ableism and barriers that still remain. This month, we’re honoring the disability community, listening to the people living it every day, and standing with the EB community as we work toward more treatments, more options, and more freedom. 🩷
The image is a poster that reads, "July is Disability Pride Month," with a pie chart segment showing categories: Mourning, Sensory, Psychiatric + Emotional, Invisible, Intellectual, and Physical. It includes the text "Honoring access, dignity, and the EB community," and features the EB Research Partnership logo at the bottom.

ALT The image is a poster that reads, "July is Disability Pride Month," with a pie chart segment showing categories: Mourning, Sensory, Psychiatric + Emotional, Invisible, Intellectual, and Physical. It includes the text "Honoring access, dignity, and the EB community," and features the EB Research Partnership logo at the bottom.
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