EB Research Partnership
EB Research Partnership is a 501(c)(3) nonprofit that funds research to treat and cure Epidermolysis Bullosa (EB), a rare genetic skin disorder. Using a Venture Philanthropy model that retains returns from successful therapies for reinvestment, EBRP serves EB patients, families, academic researchers, and biotech developers globally.
- Company typePrivate
- Founded2010
- HeadquartersNew York, United States
- Headcount11–50
- GTM typeB2B and B2C
- OfferingServices
What EB Research Partnership does
EB Research Partnership (EBRP) is a 501(c)(3) nonprofit founded in 2010 by Eddie Vedder (Pearl Jam) and Jill Vedder alongside a group of parents of children with Epidermolysis Bullosa (EB). Headquartered in New York City with 8–11 staff, the organization funds research to develop treatments and a cure for EB, a rare and life-threatening genetic skin disorder affecting children from birth. The organization's stated mission is to heal and cure EB by 2030 while developing a replicable model for the 400+ million people affected by rare diseases globally.
EBRP's core offering is its Venture Philanthropy model, a structured funding mechanism that applies venture capital principles to philanthropic grantmaking. When EBRP funds research at institutions such as Stanford University and the University of Minnesota, it retains financial upside (royalties or licensing proceeds) from resulting therapies. These returns are reinvested into additional EB research, generating what EBRP cites as a more-than-double return on invested capital, with up to 6x ROI highlighted in Harvard Business School case studies. Since 2010, EBRP has raised over $80 million, funded 189 research projects across 7 countries, and contributed to transforming the EB clinical trial landscape from 2 to over 50 active trials. The portfolio spans gene therapies, cell therapies, protein replacement, drug repurposing, and oncology approaches.
EBRP operates a hybrid revenue model. The primary funding stream is charitable donations from individuals, corporations, and foundations, supplemented by venture philanthropy returns from successful therapies. Angel donors underwrite 100% of operational costs, ensuring all public donations flow directly to research. Distribution is event- and celebrity-driven: signature events include the annual Venture Into Cures gala (NYC), Plunge for Elodie (global cold-water plunges across 4 continents), Reportin' For Duty benefit concerts, and grassroots family-organized fundraisers. In 2025 alone, EBRP funded $4.6 million across 29 projects in 7 countries, and its documentary 'Matter of Time' debuted globally on Netflix in February 2026 following its Tribeca Festival premiere. EBRP also built a first-of-its-kind global rare disease data registry with Amazon Web Services, functioning as a navigation platform connecting EB patients to doctors, trials, and support resources.
EB Research Partnership firmographics
Firmographics- Name
- EB Research Partnership
- Legal name
- EB Research Partnership
- Website
- https://ebresearch.org
- Company type
- Private
- Founded year
- 2010
- Operating status
- Operating
- Headcount range
- 11–50 employees
- Short description
- EB Research Partnership is a 501(c)(3) nonprofit that funds research to treat and cure Epidermolysis Bullosa (EB), a rare genetic skin disorder. Using a Venture Philanthropy model that retains returns from successful therapies for reinvestment, EBRP serves EB patients, families, academic researchers, and biotech developers globally.
- Ownership category
- akta.pro rank
EB Research Partnership industry classification
Industry- Product category
- Nonprofit Rare Disease Research Funding
- NAICS
- Voluntary Health Organizations (813212), Grantmaking and Giving Services (8132)
- akta.pro primary industry
- Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)
Keywords
Where EB Research Partnership is headquartered
LocationHeadquarters
- HQ city
- New York
- HQ country
- United States
- HQ region
- North America
Offices1 record
Markets served
EB Research Partnership business model
Business model- GTM type
- B2B and B2C
- Offering type
- Services
- Cost components
- Personnel, Operations, Marketing or Sales, Technology or R&D, Infrastructure
Revenue model
- Donations and Grants: The primary revenue stream is charitable donations from individuals, corporations, and foundations. EBRP operates with angel donors who underwrite all operational costs, ensuring 100% of public donations go directly to research. This creates a trust-based giving model with zero cost-leverage for operations.
- Venture Philanthropy Returns: When funded research projects result in commercially successful therapies, EBRP retains financial upside (royalties, equity returns) from its grant agreements with universities and biotech companies. These proceeds are reinvested into additional EB research, creating a self-sustaining funding cycle. The model generated a more-than-double return on investment and has been cited for up to 6x ROI in Harvard Business School case studies.
Go-to-market motion2 records
Distribution channels5 records
Marketing channels8 records
EB Research Partnership product offering
Product offeringCore offering
EB Research Partnership (EBRP) is a 501(c)(3) nonprofit that funds research to treat and cure Epidermolysis Bullosa (EB) using a Venture Philanthropy model that retains financial returns from successful therapies. The organization grants funding to academic and biotech researchers, supports three FDA-approved EB therapies, operates a global rare disease data platform built with AWS, and runs signature awareness events and a documentary ("Matter of Time") to drive donations.
Product overview
EB Research Partnership (EBRP) is a nonprofit organization dedicated to funding research to treat and cure Epidermolysis Bullosa (EB), not a traditional product company. EBRP operates primarily through its innovative Venture Philanthropy model, which combines charitable funding with financial returns from successful research investments. The organization supports multiple FDA-approved EB treatments (Vyjuvek, ZEVASKYN, Filsuvez) that emerged from its funded research. EBRP's offerings include a rare disease data platform, the Matter of Time documentary, Venture Into Cures fundraising events, and the Plunge for Elodie global awareness campaign. The organization's core value proposition is accelerating EB research through sustainable funding mechanisms rather than traditional product sales.
Differentiator
Problem solved
Functional benefit
Brands
- Matter of Time: Award-winning documentary film featuring Eddie Vedder's benefit concerts, telling the story of the EB community's fight for a cure. Premiered at Tribeca Festival 2025 and released globally on Netflix.
- Venture Into Cures
- Plunge for Elodie
Products and services
- Venture Philanthropy Model
- EB Research Grant Programs
- Rare Disease Data Platform
- Clinical Trial Information Portal
Quantifiable outcome
- From 0 to 3 FDA-approved EB treatments in 15 years, including first-ever topical gene therapy (Vyjuvek) and first autologous cell-based gene therapy (ZEVASKYN)
- +7 more outcomes
Companies that use EB Research Partnership
Customer profileNamed customers8 records
Segments3 records
Ideal customer profiles3 records
EB Research Partnership technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
AI capability2 records
Feature2 records
EB Research Partnership partnerships and signals
Strategic signalPartnerships
Twelve partnerships are on record, tiered major, core and minor.
- Milken InstitutemajorEBRP CEO Michael Hund spoke at the Milken Institute Global Conference 2026 on 'Rewriting the Rules: Scaling Innovation for Rare Diseases' alongside Dr. Jill Biden, Eva Longoria, Tom Brady, FDA Commissioner Marty Makary, and other global leaders. Milken Institute's FasterCures has done deep-dive case studies on EBRP's venture philanthropy model.
- Chiesi Global Rare DiseasescoreChiesi Global Rare Diseases will be honored with the Sophia's Hope Award at the 9th Annual Plunge for Elodie event in 2026 for demonstrated commitment to the EB community. Chiesi has been recognized for its work in rare diseases and its partnership with EBRP underscores its dedication to advancing treatments for EB patients.
- GWS Giants (Australian Football League)majorThe GWS Giants extended their partnership with EB Research Partnership Australia (EBRPA) for a third year in 2026. The partnership includes displaying EBRP's logo on the front of the Giants' playing shorts, dedicating match days to raise funds for EB, and the #StandUpforEB butterfly wings activation. Pearl Jam acknowledged the Giants during their Sydney concert tour. Extension coincides with global Netflix release of 'Matter of Time'.
- DEBRA ResearchmajorDEBRA Research invested in Eliksa Therapeutics to support development of ELK-003, a biological eye drop for ocular complications in EB patients. The investment will fund clinical trials involving 18 patients, assessing safety and efficacy with the aim of securing regulatory approval in the US and other markets.
- New York Stock Exchange (NYSE)majorEB Research Partnership rang the NYSE Opening Bell in August 2025 in a milestone moment to shine a global spotlight on Epidermolysis Bullosa. EB families and advocates joined EBRP for the ceremony celebrating the organization's groundbreaking progress and growing impact on the rare disease community.
- San Diego Padres and Seattle Mariners (MLB — Vedder Cup)majorThe Padres and Mariners joined Eddie Vedder in creating the Vedder Cup, an annual rivalry series trophy (a custom Fender Telecaster guitar) beginning in 2025. Both teams partner with EBRP to support EB research. The Vedder Cup generates significant MLB fanbase engagement and fundraising for EBRP, with the trophy crafted by Eddie Vedder himself.
- TWi BiotechnologyminorTWi Biotechnology is listed as a 2025 partnership collaborating with EBRP to translate EB research into therapeutic momentum, as part of EBRP's broader portfolio of biotech and pharma partnerships advancing EB treatments.
- Castle Creek BiosciencesminorCastle Creek Biosciences is listed as a 2025 partnership collaborating with EBRP. EBRP CEO Michael Hund previously held executive roles at Castle Creek Therapeutics, and EBRP's venture model facilitates ongoing collaboration with the company on EB therapy development.
- Chan Zuckerberg Initiative (CZI)majorEBRP CEO Michael Hund delivered a keynote at CZI's 2023 Science in Society Annual Meeting on advancing patient-driven research in rare disease. CZI's Rare as One Project supports patient-led organizations working to improve lives of people affected by rare disease. EBRP's model is featured in CZI's ecosystem as a leading patient-driven research approach.
- Amazon Web Services (AWS)coreIn 2019, EBRP CEO Michael Hund challenged AWS to build a first-of-its-kind global database for all rare diseases, functioning like GPS to guide patients to nearest doctors, research studies, treatment clinics, trials, and patient support groups. AWS partnered with EBRP to build this data platform. EBRP was also invited to keynote AWS's IMAGINE: Nonprofit Conference alongside First Lady Jill Biden.
- Stanford UniversitycoreStanford University is a key research partner through which EBRP pioneered its venture philanthropy agreements. EBRP funding supported Dr. Anthony Oro and Dr. Jean Tang's gene and cell therapy research that contributed to Vyjuvek and ZEVASKYN approvals. Deshe Family donations also funded Stanford research. Stanford OTL 2025 annual report highlights novel gene therapy progress for EB.
- University of MinnesotacoreThe University of Minnesota was a founding partner with Stanford in pioneering EBRP's venture philanthropy grant agreements. EBRP's model was developed through partnerships with these two institutions, and returns from successful research at these institutions are reinvested into the broader EB research portfolio.
Scale indicators9 records
Expansion highlights6 records
EB Research Partnership competitors and assessment
Company assessmentBroad incumbents
- Chiesi Global Rare Diseases: Global rare-disease-focused commercial developer that partnered with EBRP (Sophia's Hope Award sponsor) and now markets EB treatments. Compares as the commercial-counterparty to EBRP's venture philanthropy funding pipeline.
- National Organization for Rare Disorders (NORD): Umbrella advocacy and research-funding organization for the entire rare-disease community. Comparable in scale and federal-policy influence; less specialized than EBRP on a single disease.
Direct peers
- Parent Project Muscular Dystrophy: Patient-founded nonprofit focused on Duchenne muscular dystrophy that funds translational research, drives regulatory engagement, and operates a venture philanthropy framework — same playbook EBRP uses for EB.
- ALS Association: Disease-specific research and patient-support nonprofit using high-visibility fundraising (Ice Bucket Challenge legacy) combined with biotech and academic partnerships. Closely comparable in celebrity-amplified community fundraising model.
- Chan Zuckerberg Initiative Rare As One Network: CZI program funding patient-led rare-disease organizations to build research infrastructure — directly comparable mechanism (community-driven research capacity building) and overlapping funder ecosystem.
- Cystic Fibrosis Foundation: Disease-specific research nonprofit that pioneered a venture philanthropy model and royalty-recycling approach to accelerate drug development — the conceptual template EBRP adapted for EB. Comparable in funding scale, model architecture, and patient-community-driven fundraising.
- DEBRA International: Global umbrella for national EB organizations (including DEBRA Research and DEBRA US) funding EB research and supporting patients. Direct disease peer; EBRP and DEBRA co-invest in programs like the Eliksa ocular-complications trial.
- Multiple Myeloma Research Foundation: Disease-focused research funding nonprofit using partnership-driven, venture-style models to accelerate treatment pipelines. Highly comparable operating model and federal-grant-style governance; Michael Hund served as Director here before EBRP.
- EveryLife Foundation for Rare Diseases: Rare disease advocacy and policy nonprofit that convenes funders, researchers, and patients across the 7,000+ rare-disease landscape — overlapping EBRP's broader-rare-disease positioning and policy work.
Emerging players
- RARE-X (data platform): Nonprofit data platform aggregating patient records across rare diseases to accelerate research. Comparable to EBRP's AWS-built EB data registry and a potential collaborator or competitor as EBRP expands its registry scope.
Market position
Strengths5 records
Weaknesses5 records
Competitive moat6 records
Key risks7 records
Key highlights7 records
Customer concentration
EB Research Partnership social profiles
Digital presenceEB Research Partnership financial estimates
Financial estimateRevenue estimate
Valuation estimate
EB Research Partnership leadership team
Management profileNumber of profiles
Profiles27 records
EB Research Partnership funding detail
Funding detailFunding overview
Funding rounds
Investors
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EB Research Partnership M&A and investment
M&A and investmentM&A
Investments2 records
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Frequently asked questions about EB Research Partnership
What does EB Research Partnership do?
EB Research Partnership (EBRP) is a 501(c)(3) nonprofit that funds research to treat and cure Epidermolysis Bullosa (EB) using a Venture Philanthropy model that retains financial returns from successful therapies. The organization grants funding to academic and biotech researchers, supports three FDA-approved EB therapies, operates a global rare disease data platform built with AWS, and runs signature awareness events and a documentary ("Matter of Time") to drive donations.
Is EB Research Partnership a public or private company?
EB Research Partnership is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was EB Research Partnership founded?
EB Research Partnership was founded in 2010. It employs 11 to 50 people.
Where is EB Research Partnership based?
EB Research Partnership is headquartered in New York, United States, in the North America region.
How does EB Research Partnership make money?
Two revenue lines are on record. Donations and Grants are the primary driver. The others are venture Philanthropy Returns.
Who are EB Research Partnership's main competitors?
Broad incumbents on record are Chiesi Global Rare Diseases and National Organization for Rare Disorders (NORD). Direct peers are Parent Project Muscular Dystrophy, ALS Association, Chan Zuckerberg Initiative Rare As One Network, Cystic Fibrosis Foundation, DEBRA International, Multiple Myeloma Research Foundation and EveryLife Foundation for Rare Diseases. RARE-X (data platform) is listed as an emerging player.
Does EB Research Partnership have an API?
No public API is recorded for EB Research Partnership.
What industry is EB Research Partnership in?
EB Research Partnership's product category is Nonprofit Rare Disease Research Funding. Its primary akta.pro industry code is BPAGACAA, Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS). Its NAICS code is 813212.