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 research
Small Grant Research Program
Advancing the Community of EDS Researchers
Program Description
The Ehlers Danlos Syndrome Research Foundation (EDSRF) Small Grant Research Program is intended to support projects that will advance research in EDS. Projects may include proof of concept or method development activities, such as gathering preliminary data to support future larger grant proposals and develop a line of research in EDS that can be carried forward into an academic career.
Research Priority Focus Topics
Impact, diagnosis, and management of EDS
Interventions or targeted therapies that are solution-based and impactful
Studies with meaningful, near-immediate effects on clinical practice
Eligibility
Priority is given to new, early-stage researchers including students, residents and junior faculty. Established researchers may apply to support a new research project that would focus their work on EDS. Projects that are a prelude to other external funding agencies are favored.
Activities Supported
EDSRF awards provide up to $5,000 direct cost for 1 year. Funds may be used for project-related expenses including data collection, preliminary analysis, collaborative activities with partnering colleagues, etc. The EDSRF offers a maximum of 5% of the value of the funding or grant as allowable indirect or Facilities and Administrative (F&A) costs.
Applying for Funding
Applications can be submitted at any time. Awards will be made on a rolling basis.
Grants will be awarded based on the potential impact and advancement of the EDS research community. All requests for funding undergo a thorough review by our Executive Board in consultation with members of our Medical Board. Reviewers agree to keep information reviewed during the application process strictly confidential.
Please send your proposal, with the information provided in the outline below, to EDSRF by email at: grants@edsrf.org
Download a PDF of the instructions for our Small Grant Research Program application process.
“Lift the Paywall” Program
Providing Open Access for EDS-Focused Research Articles
In keeping with our mission, the Ehlers-Danlos Syndrome Research Foundation (EDSRF) has created its “Lift the Paywall” Program: Providing Open Access for EDS-Focused Research Articles to pay researchers’ Open Access (OA) fees. Funding fees for OA can range from $1,000 - $5,000 and the average is approximately $3,000 for each article. This program will in turn help amplify Ehlers-Danlos Syndrome (EDS) research, by “lifting the paywall” and providing access to research for both the healthcare professionals across all specialties and to the public, including patient and caregivers.
Program Description
The “Lift the Paywall” Program is intended to pay or reimburse the OA fees for articles advancing research in EDS.
Funding
Awards provide up to $5,000 total cost to pay for, or reimburse, publishing fees.
Applying
Applications can be submitted at any time. Decisions for OA funding will be made on a rolling basis. Open access funding requests undergo review by our Executive Board in consultation with our Medical Board.
Submit your application for Open Access funding, with the information provided in the application requirements document, to EDSRF by email at: grants@edsrf.org
Questions About Funding?
Please feel free to ask questions about the overall grant process before applying.
Contact grants@edsrf.org
EDSRF 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
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.