EB Research Partnership (EBRP), a 501(c)(3) non-profit organization, awards grants for research projects with the potential to lead directly to commercially feasible products and therapies for treating and/or curing Epidermolysis Bullosa (EB).

Applicants are invited to submit an application via EBRP’s grants management system.  Applications will be evaluated and scored by EBRP's Scientific Advisory Board (SAB). Based on the SAB’s evaluation and scoring of applications and other criteria, EBRP’s Executive Board will select specific projects for funding. Upon approval and if not already in place, EBRP will ​establish research contracts with the appropriate host institution(s).  Any request by EBRP for additional information should not be considered as a Notice of Grant Award, nor should it be construed as an indicator of possible award. Grants awarded will be subject to EBRP Grant Guidelines, including a 5% limit on indirect costs. EBRP employs a venture philanthropy model for all funded projects, unless a specific waiver is granted for a highly specific reason. We also require documentation of Humane Care and Use of Laboratory Animals and documentation of Human Subjects approvals, whenever necessary.

EB Research Partnership abides by a Whistleblower Policy and Anti-Corruption Policy.

Research projects submitted for review:

  • Should be designed to result in the creation of EB therapies with the aim of commercialization within the next 1-4 years.  Approaches that lead to meaningful step changes in the quality of lives of those living with EB and/or aim to be curative will be prioritized.  All approaches must include thoughts around commercial sustainability. ​
  • May relate to repurposing existing drugs or products for EB, if expected to significantly impact EB patients’ quality of life
  • May be intended to provide localized or systemic benefit to EB patients.
  • May involve pre-clinical or clinical trial work. However, clinical trial work is strongly preferred. Projects involving pre-clinical work should include a detailed plan and timeline regarding commercialization.
  • May relate to developing research-enabling tools, such as data collection and analysis platforms, to accelerate clinical trials.
  • Should not be concerned primarily with basic or open-ended research projects without the intention to lead directly to commercially feasible EB therapies.

Grants awarded will provide project funding for 1 year. Multi-year research applications should include a proposed timeline and milestones with budget. Depending upon the success of the initial year’s activity and availability of future funding, there is potential for grants to be renewed annually for up to 5 years.

Q3 2022 Grant Cycle
EBRP expects to review applications for future funding cycles semiannually. The application deadline for the next funding cycle is October 10, 2022 at 11:59 PM EST. The SAB will then evaluate and score the submitted LOIs, after which applicants will be contacted with the results. Applications must be submitted through this grants management platform.

Thank you for your interest in the Epidermolysis Bullosa Clinical Research Consortium (the “EBCRC”).  The purpose of the EBCRC is to facilitate collaborative clinical research on Epidermolysis Bullosa that will lead to improvements in EB patient outcomes.  The EBCRC database (also called the EB Clinical Characterization and Outcomes Database) is designed to support longitudinal studies of patient outcomes. It is open and accepting data.
To encourage participation in the EBCRC, EB Research Partnership (“EBRP”), together with Epidermolysis Bullosa Medical Research Foundation (“EBMRF”), invites applications for financial support from medical centers which are either currently enrolling or wish to enroll patients in the EBCRC database. EBRP and EBMRF may award grants to fund a portion of salary and benefits for investigators and research coordinators or research assistants supporting the activities of the EBCRC database under the direction and supervision of a principal investigator caring for EB patients. The award period will be one year, unless specified otherwise in the grant application.

Applicants should complete and submit the following applicant form on or before October 7, 2022.  Applications will be evaluated by EBRP and EBMRF.  Applicants selected for an EBCRC grant will receive a notice of award from EBRP by email with further instructions for finalizing funding and other arrangements.
We look forward to hearing from you!

General Terms and Conditions Applicable to Grant Recipients

  • Grant recipients will be required to submit a brief report at least every six months during the award period and at the conclusion of the award period.  Reports should contain a summary of the applicant’s EBCRC activities, as well as any issues or concerns of the applicant regarding the EBCRC.
  • Under no circumstances may any portion of an award be allocated to indirect costs.
  • Newly acquired patient data must be entered in the database within 90 days of the sub-grant award date, and all previously acquired data must be enrolled in the database within 6 months of the sub-grant award date.
  • Grant recipients must at all times maintain complete and accurate books and records in regard to EBCRC grants and make such books and records reasonably available for inspection upon request.
  • Grant funds may be withheld at any time pending resolution of a dispute with respect to the use of funds by grant recipients and/or the satisfaction of any conditions and requirements of the grant.  Grant recipients must promptly return any portion of an award that has not been expended for the purposes of the grant at of the end of the award period. A no-cost extension may be requested to support ongoing study activities.
  • Applicants must promptly furnish any information concerning a change or a proposed change in the grant recipient’s 501(c)(3) tax-exempt status.  Any such change or revocation of the grant recipient’s 501(c)(3) status may result in the immediate termination of the award.
  • Grant recipients, EBRP and EBMRF will at all times comply with applicable laws regarding the confidentiality of clinical patient’s medical records and other health information, will hold the clinical patients’ personal identifying information in confidence and will act in accordance with the HIPAA Authorizations.

EB Research Partnership