EB Research Partnership

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.

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

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

• Rare disease research funding
• Venture philanthropy grants
• Epidermolysis bullosa research
• Nonprofit medical grants
• Gene therapy funding

Headquarters

HQ city

New York

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2B and B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Technology or R&D, Infrastructure

Revenue model

1. 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.
2. 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

Core 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

Named customers8 records

Segments3 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

AI capability2 records

Feature2 records

Partnerships

Twelve partnerships are on record, tiered major, core and minor.

• Milken InstitutemajorStrategic or Co-development Partner · 5 May 2026EBRP 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 DiseasescoreStrategic or Co-development Partner · 3 March 2026Chiesi 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)majorGTM or Marketing Partner · 2 March 2026The 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 ResearchmajorStrategic or Co-development Partner · 29 October 2025DEBRA 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)majorGTM or Marketing Partner · 20 August 2025EB 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)majorGTM or Marketing Partner · 14 March 2025The 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 BiotechnologyminorStrategic or Co-development Partner · 1 January 2025TWi 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 BiosciencesminorStrategic or Co-development Partner · 1 January 2025Castle 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)majorStrategic or Co-development Partner · 1 January 2023EBRP 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)coreTechnology or Integration · 1 January 2019In 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 UniversitycoreStrategic or Co-development Partner · 1 January 2010Stanford 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 MinnesotacoreStrategic or Co-development Partner · 1 January 2010The 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

Broad 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

• Xx.com/ebresearch
• YouTubeyoutube.com/c/ebresearchpartnership
• Facebookfacebook.com/ebresearch
• LinkedInlinkedin.com/company/eb-research-partnership/mycompany
• Instagraminstagram.com/ebresearch

Revenue estimate

Valuation estimate

Number of profiles

Profiles27 records

Funding overview

Funding rounds

Investors

Funding detail is available on the Subscription and Enterprise plan.Contact sales →

M&A

Investments2 records

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about EB Research Partnership