Founded in 2010 by a dedicated group of parents along with Jill and Eddie Vedder of Pearl Jam, EB Research Partnership (EBRP) is the largest global nonprofit dedicated to funding research to accelerate treatments and find a cure for Epidermolysis Bullosa (EB), a group of devastating and life-threatening skin disorders that affect children from birth. Children with EB are often called "Butterfly Children" because their skin is as fragile as the wings of a butterfly. For the 500,000 people around the world living with EB, everyday activities like eating, sleeping, walking and playing can become monumental tasks that often require modification.
Over the last decade, EBRP has made undeniable progress in its mission to find a cure for this community, including: raising over $70M to fund 160+ EB projects, contributing to a 25x growth in the EB clinical trial landscape, and directly funding two FDA-approved EB treatments. EBRP will continue to build off this momentum and is dedicated to delivering a cure for the EB community while paving a path for rare disease at large. To achieve this bold mission, we're accelerating innovative research right in your backyard!
Over the last decade, EBRP has made undeniable progress in its mission to find a cure for this community, including: raising over $70M to fund 160+ EB projects, contributing to a 25x growth in the EB clinical trial landscape, and directly funding two FDA-approved EB treatments. EBRP will continue to build off this momentum and is dedicated to delivering a cure for the EB community while paving a path for rare disease at large. To achieve this bold mission, we're accelerating innovative research right in your backyard!
Squamous cell carcinoma (SCC) metastasizes quickly and is the most common cause of death in young adults with RDEB, but diagnosis is challenging even for experts. In this ongoing project, the team at Northwestern has developed an AI, deep learning model that can distinguish SCC from non-SCC lesions on photographs of RDEB skin. The model will be integrated into an app with the long-term goal of a tool for patients and physicians for interpretation of RDEB skin photography to assist in finding SCCs as early as possible, even from the comfort of their homes!
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Dr. Amy Paller is a distinguished clinician and researcher specializing in pediatric dermatology. She serves as the Walter J. Hamlin Professor of Dermatology and the Chair of the Department of Dermatology at Northwestern University Feinberg School of Medicine. Additionally, she directs the NIH-funded Skin Biology and Diseases Resource-Based Center and practices at Lurie Children’s Hospital of Chicago, focusing on genetic and inflammatory skin disorders in children.
Her research encompasses nanotechnology-based gene therapy, diabetic wound healing, and the role of glycosphingolipids in skin biology. Her laboratory has pioneered the use of spherical nucleic acids for topical gene suppression, targeting conditions such as psoriasis, atopic dermatitis, and diabetic ulcers. She has also led nearly 100 clinical trials in pediatric dermatology, contributing significantly to the understanding of biomarkers and patient-reported outcomes in skin diseases. |
Although viral-based gene therapy has been studied for RDEB, viral vectors are associated with immune responses and potential genotoxicity. RNA-based therapeutics provide an alternative approach to conventional gene therapy, but RNA molecules have a short half-life, limiting their therapeutic efficacy for genetic diseases. To engineer RNA vectors for durable expression in skin, the team at the University of Chicago has designed a continuous directed evolution platform with skin keratinocytes by leveraging the intrinsic mutagenic potential of RNA replicon vectors. With this innovative platform, they have identified a novel Sindbis replicon, which can greatly enhance expression of “cargo” genes under the subgenomic promoter in vitro and in vivo. They are currently studying the therapeutic efficacy of the engineered replicon vector for gene therapy of RDEB, which would change the landscape of how EB is treated.
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Dr. Xiaoyang Wu is an Associate Professor in the Ben May Department for Cancer Research at the University of Chicago. His research focuses on epidermal stem cells, exploring their roles in tissue homeostasis, wound healing, and regenerative medicine. His lab investigates the molecular mechanisms governing stem cell behavior, particularly in skin biology.
His work has led to the development of genetically engineered skin grafts capable of delivering therapeutic proteins, offering potential treatments for conditions like diabetes and hemophilia. Additionally, Dr. Wu has developed a lactate-responsive drug delivery system targeting the Warburg effect in cancer cells, aiming to improve the specificity and efficacy of cancer immunotherapies. |
At EBRP, we know that in order to do things that haven’t been done you need to be willing to break the mold.
With this innovative business model we’re pioneering a new path forward that will not only revolutionize the way nonprofits operate, but also show the world how cures are found. We don’t just write checks and hope for the best. Instead, we operate like a venture capitalist with a focus on a different kind of ROI, return on impact. We create venture agreements with each project we fund. When those projects succeed, the returns are reinvested back into other promising research and development projects.
Did we mention the science we fund is also scalable across thousands of other rare diseases? That's right. The impact of every dollar invested at EBRP is multiplied many times over.
With this innovative business model we’re pioneering a new path forward that will not only revolutionize the way nonprofits operate, but also show the world how cures are found. We don’t just write checks and hope for the best. Instead, we operate like a venture capitalist with a focus on a different kind of ROI, return on impact. We create venture agreements with each project we fund. When those projects succeed, the returns are reinvested back into other promising research and development projects.
Did we mention the science we fund is also scalable across thousands of other rare diseases? That's right. The impact of every dollar invested at EBRP is multiplied many times over.
Our Venture Philanthropy Model has been highlighted for its leadership by Harvard, Yale, MIT, the Milken Institute, Stanford Social Innovation Review, and more.
With this business model we are actively transforming the EB landscape while creating scalable impact. These projects, this work, and the way we operate will create a butterfly effect for the 400M+ globally impacted by a rare disease.
Download our Impact Booklet to explore the Harvard Business School and Yale School of Management case studies on EBRP's innovative model and transformative impact.
Download our Impact Booklet to explore the Harvard Business School and Yale School of Management case studies on EBRP's innovative model and transformative impact.
Children with EB are often called “Butterfly Children” because their skin is as fragile as the wings of a butterfly. With skin this fragile, everyday activities that many take for granted like eating, sleeping, walking and playing can become monumental tasks.
The harsh reality is that rare diseases affect more people than HIV and Cancer combined. EB is one of over 10,000 rare diseases, 95% of which have no approved treatments or cures. We are focused on finding a cure for EB, but for us that’s just the beginning. |
Founded in 2010 by a group of dedicated parents, Jill Vedder, and Eddie Vedder of Pearl Jam, EB Research Partnership (EBRP) is the largest nonprofit funding research aimed at finding a cure for Epidermolysis Bullosa (EB).
Over the last decade, we have made remarkable strides, including raising +$70M for life-saving research, contributing to a 25x growth in EB clinical trials, and directly funding 2 FDA approved treatments and helping to accelerate the third. The progress we’ve made in EB is undeniable, however, we are only scratching the surface. Our Venture Philanthropy Model is actively transforming the EB landscape while creating scalable impact. These projects, this work, and the way we operate will create a butterfly effect for the 400M+ globally impacted by a rare disease. |