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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

Ready to Apply?

EDSRF Research Grant Programs

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.

Ready to Apply?

“Lift the Paywall” Program

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 Grants Awarded

EDSRF Research Projects

RESEARCH CURRENTLY UNDERWAY

Featured
Prevalence of Ehlers Danlos Syndromes and Autonomic Dysfunction in Patients with Mannose Binding Lectin Deficiency
Currently Underway
Prevalence of Ehlers Danlos Syndromes and Autonomic Dysfunction in Patients with Mannose Binding Lectin Deficiency
Currently Underway

In this study researchers aim to assess the prevalence of HEDS/HSD, autonomic dysfunction, including POTS, in patients found to have deficiencies in the innate immune compartment, mannose binding lectin (MBL) deficiency.

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Currently Underway
Economic Impact of Ehlers-Danlos Syndrome: Patient Perspective
Currently Underway
Economic Impact of Ehlers-Danlos Syndrome: Patient Perspective
Currently Underway

Determine the utilization of the health care system by people with EDS and the cost of their care.

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Currently Underway
The Impact of Underinvestment in Ehlers-Danlos Syndrome
Currently Underway
The Impact of Underinvestment in Ehlers-Danlos Syndrome
Currently Underway

Assess the baseline state of provider knowledge, patient access to appropriate care, and the costs of inadequacies to both patients and society.

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Currently Underway
Prevalence of Ehlers-Danlos Syndromes in the United States
Currently Underway
Prevalence of Ehlers-Danlos Syndromes in the United States
Currently Underway

To estimate the prevalence of Ehlers-Danlos syndromes and related comorbidities in the United States.

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Currently Underway

Completed Research Projects

Research Projects
Analysis of Micronutrient Tests for Nutritional Deficiencies in Patients with Ehlers-Danlos Syndrome
Completed
Analysis of Micronutrient Tests for Nutritional Deficiencies in Patients with Ehlers-Danlos Syndrome
Completed

Identify nutritional deficiencies in people with Ehlers-Danlos Syndromes (EDS) as a starting point for potential therapeutic targeting.

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Completed
Changes in Pain and Other Symptoms of Ehlers-Danlos Syndromes Over Time
Completed
Changes in Pain and Other Symptoms of Ehlers-Danlos Syndromes Over Time
Completed

Describe the trajectory in EDS symptoms experienced in a cohort of individuals over a decade, and the factors that contributed to their ability to adapt to changing health.

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Completed
Published, Completed
Title: Patient-Reported Outcomes Following Sectioning of the Filum Terminale for Treatment of Tethered Cord Syndrome Associated with Ehlers-Danlos Syndrome
Published, Completed

The purpose of this study was to determine the safety and efficacy of surgical release of the filum terminale (FT) for the treatment of tethered cord syndrome (TCS) in patients with hypermobile Ehlers-Danlos Syndrome (hEDS).

Thirty patients, all female, who were treated with surgical release by a single neurosurgeon completed surveys with items regarding pre- and postoperative symptoms, pain levels, and satisfaction. Surgical release of the FT was safe and effective in this cohort.

Read the full article.

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Published, Completed

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.