What is venture philanthropy?
EBRP's Venture Philanthropy model leverages concepts from principal investing and applies them towards achieving philanthropic goals. When making a grant to a research project, we retain the added upside of generating a recurring donation stream if the therapy or product is commercially successful. That revenue then goes back into funding additional EB research, giving your donation the potential to grow to multiples of its original value.

​Historically, non-profits have passed on these financial benefits. Instead, EBRP participates in them, making philanthropy sustainable. Through partnerships with the University of Minnesota and Stanford University, EBRP pioneered the venture agreements that we use for all grantmaking.

​The FDA's approval of Vyjuvek, the first-ever approved EB treatment, marks a milestone in EBRP’s mission to discover treatments and a cure for EB. It provides validation for our scalable and sustainable Venture Philanthropy business model and most importantly creates hope for families around the world battling EB every day.
 
EBRP’s Venture Philanthropy business model has been highlighted for its leadership by Harvard Business School, Yale University, and MIT in helping to fast-track not only a cure for EB but therapies that could affect thousands of other rare diseases.

industry leadership

First Ever Topical Gene Therapy Approved For “Butterfly Disease” Children
May 24, 2023
Patient advocates have spent years raising awareness and funds for research through work with the non-profit EB Research Partnership (EBRP), and its unique Venture Philanthropy model. EBRP leverages concepts from principal investing and applies them towards achieving patient-oriented goals. EBRP’s Venture Philanthropy business model has been highlighted for its leadership by Harvard Business School, Yale University, and MIT in helping to fast-track both potential cures for EB as well as therapies that could affect thousands of other rare diseases. EBRP has been able to generate a more than double return on its investment and reinvest that capital back into more EB projects.
EB Research Partnership CEO Keynotes Amazon's 2024 AWS IMAGINE: Nonprofit Conference Alongside First Lady Jill Biden
Michael Hund, CEO of EB Research Partnership, a nonprofit dedicated to finding a cure for a rare disease impacting children, reflected on Dr. Biden’s message, saying, “As a nonprofit leader, hearing the First Lady address the nonprofit sector directly and communicate her passion for reducing structural and systemic inequities in health, and specifically women’s health, provided powerful inspiration for all of us pursuing ambitious goals, like finding cures, protecting the planet, and scaling vital services to so many around the world.” In addition to Dr. Biden, the keynote stage featured Allyson Fryhoff, managing director of the AWS Global Healthcare and Nonprofit team; Bourhan Yassin, CEO of Rainforest Connection; Chris Anderson, curator of TED; and Michael Hund, CEO of EB Research Partnership. From delivering scaled solutions that protect our natural world to setting audacious goals and timelines to find cures for rare diseases, these leaders highlighted the importance of leveraging technology to accelerate important nonprofit missions. 
The Chan Zuckerberg Initiative was founded in 2015 to help solve some of society’s toughest challenges — from eradicating disease and improving education, to addressing the needs of local communities. Their mission is to build a more inclusive, just, and healthy future for everyone. To help achieve this, they created the Rare as One Project to ​support patient-led organizations working to improve the lives of people affected by rare disease
EB Research Partnership CEO Keynotes Chan Zuckerberg Initiative’s 2023 Science In Society Meeting
EB Research Partnership's CEO, Michael Hund, was a keynote speaker at the Chan Zuckerberg Initiative's 2023 Science in Society Annual Meeting: Advancing Patient-Driven Research In Rare Disease.  In this keynote to open the Patients Driving Breakthroughs and Progress in Rare Disease Research, Treatments, and Cures session, Michael highlights the organization's work to advance research in Epidermolysis Bullosa, leading to progress against the disease, including the recent FDA approval of Vyjuvek, the first-ever FDA approved treatment for EB.
FasterCures, a center of the Milken Institute, is working to build a system that is effective, efficient, and driven by a clear vision: patient needs above all else. They believe that transformative and life-saving science should be fully realized and deliver better treatments to the people who need them. 
Venture Philanthropy in Action
"Patient-driven foundations are focused on the asset that can’t be replaced—time. " The Milken Institute's FasterCures took a deep dive into our  Venture Philanthropy model in The Research Acceleration and Innovation Network (TRAIN) webinar series. The discussion focuses on the formation of Wings Therapeutics, facilitated by EBRP, to take over development of ProQR Therapeutics' EB therapy. 
Implementing a Dynamic Venture Philanthropy Practice
​The role of nonprofit organizations has expanded to include investors, advocates, and supporters. Venture philanthropy provides a tool for nonprofits to accelerate the movement of therapeutic assets from bench to bedside using investment mechanisms. In this FasterCures TRAIN webinar, EB Research Partnership was part of a panel that discussed the myriad of ways EBRP has leveraged venture philanthropy to accelerate biomedical research and development for Epidermolysis Bullosa (EB). 
With over 400 million people worldwide living with one of the 7,000 known rare diseases, the lack of FDA-approved treatments is a significant hurdle. EB, a life-threatening, painful genetic skin disorder affecting children from birth, is no exception. The scarcity of centralized EB datasets and reliable resources blocks progress toward effective therapies and improved patient experiences. 

That’s where EBRP comes in. Their platform aims to bridge these gaps by collecting comprehensive patient data and making it accessible to all stakeholders. By allowing patients to contribute their health information directly, the platform accelerates therapy development, creating a roadmap toward a personalized patient journey and treatments. The vision is to create a world where rare disease data is securely shared among researchers, doctors collaborate seamlessly, and patients are empowered to navigate their journey towards a cure.
Harvard Business School's Kraft Precision Medicine Accelerator focuses on advancing therapies for patients by employing modern business plans that keep up with cutting-edge science. As a member, EBRP advises the group on Venture Models to accelerate cures.
Seizing Opportunities in the Current Life Sciences Environment: Venture Approaches details 4 venture philanthropy case studies that exhibit how EBRP is venturing into cures.
Innovative Funding Models to Drive Cures highlights EBRP as a leader in the Venture Philanthropy.
Venture Models can Accelerate Cures, but aren't for the Faint of Heart covers the evolution of EBRP's venture model, from funding academic medical centers, to parterning with biotech and pharma companies, forming new companies, and creating a holding company for rare derm biotechs.
In 2019, EBRP CEO, Michael Hund, challenged the organization, along with AWS, to build a first-of-its-kind global database for all rare diseases in the world that would guide patients to the nearest doctors, research studies, treatment clinics, trials of new drugs and patient support groups the same way GPS guides users to the nearest restaurant or gas station. "I want EB to be the first runway study so that we can prove the model and then go disrupt the world with this product." The registry would not only provide up- to-date information and support to those living with EB, it would also attract medical researchers to hone in on EB and rare disease to devise treatments. Yale's School of Management dives into what the structure of this platform means for patients and their trust.

Learn More

To realize our vision of a world without EB, we're building a model based on three core pillars: Share, Collaborate, Cure. Learn more about our Venture Into Cures methodology to accelerate the path to EB therapies.
Global Genes covers our model from Venture Philanthopy, to strategic partnerships, and our vision for a first-of-its kind data platform to advance treatments and cures for EB in this case study.

in the press

OCTOBER 26, 2022
In this episode of OnAir: Health Care, Akin Gump senior policy advisor Matthew Hittle and consultant Dr. Mario Ramirez welcome Michael Hund of EB Research Partnership. Among other topics, they discuss the severe challenges of the disease EB, or epidermolysis bullosa, the venture philanthropy model of funding research into rare diseases, and leading technologies in treating EB and other genetic diseases.
OCTOBER 26, 2022
Tune in to learn how the “venture philanthropy” model EBRP uses differs from typical investing, and hear about important fundraising events for EB including Venture Into Cures hosted by Spiderman actor Tom Holland. And be sure to stay tuned to hear their advice to medical providers on the importance of building rapport with patient families, and taking an interdisciplinary approach to treating rare disorders.
AUGUST 31, 2022
In each episode of Break Everything... in Healthcare, healthcare leaders dream BIG about paradigm-shifting ways they want to make the Healthcare system more compassionate, effective, and efficient. In this episode, Lisa interviews Michael Hund, MBA, the CEO of EB Research Partnership, a game-changing medical research organization dedicated to curing the life-threatening genetic skin disease Epidermolysis Bullosa (EB) and pioneering the innovative business model of Venture Philanthropy. ​
AUGUST 13, 2020
​"Just because you're a nonprofit doesn't mean you can't act like a business" says EBRP CEO Michael Hund in USA Today. As a member of Harvard Business School's Kraft Precision Medicine Accelerator, a program that offers guidance to medical nonprofits in search of cures, he advises the group on navigating venture philanthropy. Although COVID-19 has posed unique challenges to the medical research community, EBRP has forged ahead to advance therapies for EB.

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