Mission
The Epidermolysis Bullosa Medical Research Foundation (EBMRF) was established in 1991 to fund research for Epidermolysis Bullosa, a group of genetic disorders causing severe skin blistering. EBMRF promotes innovative medical research aimed at finding cures and effective treatments for EB patients, while ensuring all operational costs are covered by volunteers to maximize funding available for research.
Basic Information
Tax-Exempt
Founded in
Not Reported
EIN
94-3130081
Total Assets
$3.8 million
UN Sustainable Development Goals Supported
This organization contributes to the following United Nations Sustainable Development Goals. See the SDG page for more information.
Showing 2 of 2 goals
At a Glance
FDA Approval Announcement
The FDA's recent approvals mark significant milestones in the treatment of epidermolysis bullosa.
Rock4EB Event Highlights
Annual fundraising event that has raised millions for EB research.
Healing Wings Butterfly Necklace
A special jewelry piece designed to support the foundation, with proceeds benefiting EB research.
Impact Stats
2023
Year Approved
FDA Approval of Vyjuvek
The FDA approved Vyjuvek, a topical gene therapy drug for wound treatment in dystrophic EB.
2023
Year Approved
FDA Approval of Filsuvez
The FDA approved Filsuvez, a topical gel for wound treatment in EB patients aged 6 months and older.
$10 million
Total Amount Funded
Total Funds Raised
Raised nearly $10 million for EB research since inception.
Past Events
BACKSTAGE PASS Auction
2020-05-18
An online auction featuring celebrity meet & greets to aid families in need of EB.
I AM THE HIGHWAY: TRIBUTE TO CHRIS CORNELL
2019-01-16
Special music event honoring Chris Cornell featuring performances by major artists.
Sip. Savor. Support.
2018-11-12
Annual fundraiser featuring food and wine tastings to support EB research.
Upcoming Events
ROCK4EB 2024
2024-05-06
An annual fundraising concert featuring performances from various artists.
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