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At EBRP, we have one bold audacious goal: cure EB by 2030. In the process, we’re pioneering a model that can benefit the more than 400 million people affected by a rare disease. We are proud of the unprecedented progress being made towards achieving that goal and our team is more inspired than ever to continue advancing life-saving treatments and cures for EB families across the globe.
With your generous support in 2023, EBRP achieved a record breaking year for dollars raised and research funded: we raised more than $8 million to fund 18 innovative research projects across 5 countries.
This work will accelerate cutting-edge science with the potential to heal all forms of EB via a portfolio of breakthrough approaches such as gene therapies, immune therapies, antibody therapies, messenger RNA, stem cell therapies, curative medicine, and more. Since 2010, we have raised over $60 million, funded more than 140 projects, and directly transformed the EB clinical trial landscape. Download EBRP's 2023 Impact Report to learn more about the progress being made on our journey to find a cure for EB and how we're paving a way forward for thousands of other rare diseases.
With your generous support in 2023, EBRP achieved a record breaking year for dollars raised and research funded: we raised more than $8 million to fund 18 innovative research projects across 5 countries.
This work will accelerate cutting-edge science with the potential to heal all forms of EB via a portfolio of breakthrough approaches such as gene therapies, immune therapies, antibody therapies, messenger RNA, stem cell therapies, curative medicine, and more. Since 2010, we have raised over $60 million, funded more than 140 projects, and directly transformed the EB clinical trial landscape. Download EBRP's 2023 Impact Report to learn more about the progress being made on our journey to find a cure for EB and how we're paving a way forward for thousands of other rare diseases.
From 2 clinical trials to over 40, from 0 approved treatments to 2 FDA-approved life-changing therapies, our team is laser-focused – we want to cure EB by 2030. Please consider making a donation so we can make this a reality.
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2023 was a year of major milestones. Not one, but two FDA approvals. In May, the first FDA approved treatment for EB and the first ever approved topical gene therapy was achieved. EBRP invested in Krystal Biotech's VYJUVEK for the treatment of Dystrophic Epidermolysis Bullosa back in 2017 using our innovative Venture Philanthropy Model. EBRP was able to generate a more than double return on our investment and reinvest that capital back into more EB projects.
Then in December, Chiesi, a team EBRP has partnered with for more than 5 years, announced the FDA approval of FILSUVEZ, a topical gel for Junctional and Dystrophic Epidermolysis Bullosa patients. These approvals are not only a landmark victory for individuals living with EB and their families, but also a huge milestone for the rare disease community at large.
Currently, 95% of rare diseases lack an FDA approved treatment — and you all are a part of the team that helped EB cross over into the 5%. With your support, we are rapidly changing this statistic.
In 2023 we also saw EBRP’s model highlighted for our leadership and innovation by Yale, Harvard, MIT, Forbes, the Milken Institute, CEOs You Should Know, SPIN, PEOPLE, USA Today, Billboard, and the Chan Zuckerberg Initiative. We’re creating extraordinary progress for EB and in the process, showing the world how cures are found. Our progress is teaching and pioneering a path for the hundreds of millions battling rare diseases worldwide.
While this progress is extremely exciting, our work is not done.
These are major milestones building more momentum than ever before, but they are not endpoints. They are key markers along the journey, but not our final destination. Having worked in service to the patient community for 20 years, these are the wins that we relentlessly fight for every day. And tomorrow, we will get up and continue fighting until there is a treatment for every patient and we achieve our ultimate goal of a cure.
We are honored to have you on the team that WILL cure EB and pioneer a path for the hundreds of millions battling rare diseases worldwide. Thank you for joining us as we continue on our venture into cures, for EB and beyond.
With gratitude,
Then in December, Chiesi, a team EBRP has partnered with for more than 5 years, announced the FDA approval of FILSUVEZ, a topical gel for Junctional and Dystrophic Epidermolysis Bullosa patients. These approvals are not only a landmark victory for individuals living with EB and their families, but also a huge milestone for the rare disease community at large.
Currently, 95% of rare diseases lack an FDA approved treatment — and you all are a part of the team that helped EB cross over into the 5%. With your support, we are rapidly changing this statistic.
In 2023 we also saw EBRP’s model highlighted for our leadership and innovation by Yale, Harvard, MIT, Forbes, the Milken Institute, CEOs You Should Know, SPIN, PEOPLE, USA Today, Billboard, and the Chan Zuckerberg Initiative. We’re creating extraordinary progress for EB and in the process, showing the world how cures are found. Our progress is teaching and pioneering a path for the hundreds of millions battling rare diseases worldwide.
While this progress is extremely exciting, our work is not done.
These are major milestones building more momentum than ever before, but they are not endpoints. They are key markers along the journey, but not our final destination. Having worked in service to the patient community for 20 years, these are the wins that we relentlessly fight for every day. And tomorrow, we will get up and continue fighting until there is a treatment for every patient and we achieve our ultimate goal of a cure.
We are honored to have you on the team that WILL cure EB and pioneer a path for the hundreds of millions battling rare diseases worldwide. Thank you for joining us as we continue on our venture into cures, for EB and beyond.
With gratitude,
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If you're feeling inspired by the momentum and progress being made please consider joining #TheEffect, our monthly giving program. Supporters who are part of this program get access to exclusive content, merchandise, and early access to events.
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Over the last decade we have seen the clinical landscape in EB completely transform, from 2 clinical trials to over 40, from 0 approved treatments to 2 FDA-approved life-changing therapies. We are proud that EB Research Partnership has directly funded over 50% of the active EB clinical trials.
EBRP accepts grant applications biannually and awards funding to competitive projects with the highest potential to lead to treatments and cures for EB. Each application is reviewed by our world-renowned Scientific Advisory Board (SAB), comprised of experts in the fields of genetics, dermatology, basic science, and biotechnology. In 2023, we approved funding for 12 new research projects and 5 project renewals. In addition, we awarded funds to our EB Clinical Research Consortium, bringing our 2023 research funding total to over $5.4M in awards.
These funded projects included a diverse portfolio of breakthrough approaches such as gene therapies, immune therapies, antibody therapies, messenger RNA, stem cell therapies, curative medicine, and more. As always, we prioritized funding for projects that are either already in clinical trials or have a strong strategy to be in the hands of patients in the next 1-3 years and will lead to significantly improving the quality of lives of those living with EB or aim to be curative. All of our projects are also scored on their ability to impact rare diseases beyond EB.
EBRP accepts grant applications biannually and awards funding to competitive projects with the highest potential to lead to treatments and cures for EB. Each application is reviewed by our world-renowned Scientific Advisory Board (SAB), comprised of experts in the fields of genetics, dermatology, basic science, and biotechnology. In 2023, we approved funding for 12 new research projects and 5 project renewals. In addition, we awarded funds to our EB Clinical Research Consortium, bringing our 2023 research funding total to over $5.4M in awards.
These funded projects included a diverse portfolio of breakthrough approaches such as gene therapies, immune therapies, antibody therapies, messenger RNA, stem cell therapies, curative medicine, and more. As always, we prioritized funding for projects that are either already in clinical trials or have a strong strategy to be in the hands of patients in the next 1-3 years and will lead to significantly improving the quality of lives of those living with EB or aim to be curative. All of our projects are also scored on their ability to impact rare diseases beyond EB.
* EB Research Partnership has directly funded over 50% of the active EB clinical trials.
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Since our founding over 90% of revenue has been directed to life-saving research. With your support and generosity, we will continue to fund the most innovative projects to find a cure for EB and pioneer a path forward for thousands of other rare diseases. Please consider making a tax deductible donation to support our work.
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This year's Impact Report highlights leaders in our community who share what it's like living with EB. These community members have experiences across various subtypes of EB, showcasing the strength and grace that often comes with battling EB daily. The resilience, courage and grit of EB community inspires us to fight harder for a cure every single day.
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From October 22-24, EBRP and Eddie Vedder gathered nearly 5,000 people and raised over $5 million to fund life-saving research focused on accelerating treatments and cures for EB and beyond. The events kicked off early on the morning of October 22nd at Benaroya Hall for the Venture Into Cures Summit. Patients, leading researchers, and industry experts shared a vision for a future where there is a cure for EB, collaboration across institutions and support systems for any family battling a rare disease. |
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On the evening of October 22nd, the patients, families, medical experts and supporters were invited to the Chihuly Garden & Glass to enjoy art, comedy, a live auction, and more. The Venture Into Cures Dinner was not short on special moments; guests were welcomed by none other than “The Mayor” of Major League Baseball, Sean Casey, and enjoyed some comedy by the Roastmaster General, Jeff Ross.
After hours of learning, connection, and fun at the Venture Into Cures Summit & Dinner, the group continued on to raise awareness and funds for EBRP at two Eddie Vedder shows at the iconic Benaroya Hall. Eddie Vedder beautifully weaved compelling stories and information about the cause throughout the shows including video content, speeches, and shout outs
After hours of learning, connection, and fun at the Venture Into Cures Summit & Dinner, the group continued on to raise awareness and funds for EBRP at two Eddie Vedder shows at the iconic Benaroya Hall. Eddie Vedder beautifully weaved compelling stories and information about the cause throughout the shows including video content, speeches, and shout outs
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"Seeing our community come together in person has filled me with such pride, joy, gratitude and most importantly hope. The EB community showed up in an epic way. The patient warriors, doctors, scientists, professors, biotech geniuses, artists, comedians, and families navigating this disease were all shining bright in Seattle! There is power in people coming together for a good cause. So, thank you to everyone who has stood by us and believed in us. I feel more confident than ever – we can cure EB. We can make an impact for the millions out there battling a rare disease," said Jill Vedder, Co-Founder and Chairwoman of EB Research Partnership |
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95% of rare diseases lack an FDA approved treatment or cure. In May of 2023, DEB warriors around the world crossed into the 5% with the approval of Krystal Biotech’s VYJUVEK. VYJUVEK is a non-invasive, topical, redosable gene therapy.
EBRP invested in Krystal Biotech in 2017. Using our pioneering Venture Philanthropy Model, EBRP was able to generate a more than double return on its investment and reinvest that capital back into more EB projects. |
The investment was made via a private placement of Krystal Biotech’s common stock, and as part of the stock purchase agreement, Krystal Biotech committed to commence a Phase I clinical trial of VYJUVEK. The funding followed the highly competitive application and screening process overseen by EBRP’s Scientific Advisory Board (SAB), which is composed of leading scientists and physicians. This is not only the first-ever FDA approved treatment for EB, but also the first FDA approved topical, redosable gene therapy.
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In December of 2023, the FDA approved FILSUVEZ® (birch triterpenes), a topical gel for the treatment of partial thickness wounds in patients 6 months and older with Junctional Epidermolysis Bullosa (JEB) and Dystrophic Epidermolysis Bullosa (DEB). FILSUVEZ is the first approved treatment for wounds associated with JEB, a rare, moderate-to-severe form of EB with blisters beginning in infancy. FILSUVEZ is administered at home, allowing for integration into existing treatment routines. FILSUVEZ is applied topically to the wound at each dressing change.
EB Research Partnership is proud to partner with organizations like Chiesi who are dedicated to delivering treatments and healing for EB families everywhere. |
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Since our founding over 90% of revenue has been directed to life-saving research. With your support and generosity, we will continue to fund the most innovative projects to find a cure for EB and pioneer a path forward for thousands of other rare diseases. Please consider making a tax deductible donation to support our work.
