About EDSRF Research
The Ehlers-Danlos Syndrome Research Foundation supports research to improve diagnostic or therapeutic care for people with Ehlers-Danlos Syndromes (EDS), Hypermobility Spectrum Disorders (HSD) and related disorders.
The Foundation prioritizes clinical research focused on guiding the decisions made by patients, clinicians, and other stakeholders in the healthcare delivery system. We are especially interested in funding proposals for new investigators and pilot studies to advance the next generation of EDS researchers in the following priority focus topic areas:
Research Priority Focus Topics
Impact, diagnosis, and management of EDS
Interventions, targeted therapies that are solution-based and impactful
Studies with meaningful, near-immediate effects on clinical practice
Musculoskeletal studies (identified as an area of great need)
Long-term outcomes of spine and joint surgeries, and non-surgical interventions including complications and infection rates
EDS and HSD comorbidities and the impact of these comorbidities
Epidemiology, natural history, or clinical history
NOTE: currently not funding bench researchEDSRF RESEARCH PROJECTS
2023 EDS Research Awards Granted
Risk of Severe Disease and Post-Acute SARS-CoV-2 within Connective Tissue Diseases
Co-Principal Investigator: Daniel Sova MD (Johns Hopkins Medical Institute) and Souraya Torbey, MD (Kennedy Krieger Institute and Johns Hopkins University School of Medicine)
Other Investigators: Mahim Jain MD, PhD (Nemours Children's Hospital); Maggie Bartlett, PhD (Johns Hopkins Bloomberg School of Public Health)
Award: $200,000 (2-year grant)
Toward Artificially Intelligent Wearable Neuromodulation Systems to Address Postural Orthostatic Intolerance and Other Autonomic Disturbances in Humans with Hypermobile-type Ehlers-Danlos Syndrome
Principal Investigators: Matthew P. Ward, PhD (Purdue University); Clair A. Francomano, MD (Indiana University School of Medicine)
Other Investigators: Steven R. Steinhubl, MD (Purdue University); John Wo, MD, Thomas Nowak, MD, and Thomas Everett, PhD (Indiana University School of Medicine)
Award: $100,000 (2-year grant)
Risk Factors for Long Covid
Principal Investigator: Lisa Quadt, PhD (Brighton & Sussex Medical School)
Other Investigators: Jessica Eccles, MD (Brighton & Sussex Medical School); Jeff Lubell (Independent Researcher); Eric Hedberg, (Independent Researcher)
Award: $10,000 (1-year grant)
Research Projects Currently Underway
Completed Research Projects
Apply for Research Grant Funding
EDSRF Medical Research Grant Application Process
Thank you for your interest in the Ehlers-Danlos Syndrome Research Foundation (EDSRF) Medical Research Grant program. The Foundation awards research grants twice annually, in the spring and the fall.
What We Fund
EDSRF supports research to improve diagnostic or therapeutic care for people with Ehlers-Danlos Syndromes (EDS), Hypermobility Spectrum Disorders (HSD) and related disorders. We prioritize research studies whose findings are most likely to inform the decisions made by patients, clinicians, and other stakeholders in the healthcare delivery system. We are especially interested in funding proposals for new investigators and pilot studies to advance the next generation of EDS researchers.
At this time, the Foundation does not fund travel to, or fees associated with, conferences and meetings or tuition expenses.
Applying for Funding
Applying for funding from EDSRF is a two-stage process. The first step is to submit a Letter of Interest (LOI). If the LOI is approved, the applicant then will be invited to submit a full proposal. The requirements to complete the LOI are below. Please send any questions about your application or the process to the Foundation by email at: grants@edsrf.org
In 2023, EDSRF plans to fund pilot studies to gather preliminary data, research new topics or widen the perspective on existing topics (up to $25,000). The Foundation funded two larger-scale, multi-year projects during the spring grant cycle.
The Review Process
EDSRF makes grant award decisions twice a year. All requests for funding undergo a thorough review by our Executive Board in consultation with members of our Medical Board and as needed, independent experts for scientific merit. Reviewers agree to keep information reviewed during the application process strictly confidential using signed Non-Disclosure Agreements.
Download a PDF of the instructions for our grant application process.
Letter of Interest (LOI)
The Foundation accepts Letters of Intent (LOI) for grant funding on an ongoing basis, with review cycles occurring twice annually, once in the spring and once in the fall. Please limit your submission to 3 pages and email completed LOIs to grants@edsrf.org.
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Why the project is needed in the field of EDS/HSD and related disorders
Preliminary work completed (if applicable)
Is there existing research in this area, if yes, how does your project differ, or enhance, existing work
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Overview of the project activities
Indicate if there will be collaboration with other organizations
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State the specific outcomes that the project aims to achieve
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Qualifications of the investigators
Organization and support
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General description of the funding needs, total amount of request, and timeline
2023 Funding Calendar
Round 1: Spring 2023
Letter of Intent Due: March 27, 2023
Applicants Notified of LOI Decision: April 3
Full Application Due from Invited Applicants: April 24, 2023
Grant Recipients to be Notified: June 26-30
Round 2: Fall 2023
Letter of Intent Due: July 28, 2023
Applicants Notified of LOI Decision: August 11, 2023
Full Application Due from Invited Applicants: September 22, 2023
Grant Recipients to be Notified: November 10–17, 2023
Questions About Funding?
Please feel free to ask questions about the overall grant process before applying.
Contact grants@edsrf.org
The Ehlers Danlos Syndrome Research Foundation (EDSRF) offers a maximum of 5% of the value of the funding or grant as allowable indirect or Facilities and Administrative (F&A) costs.