Our Mission
The mission of the Ehlers-Danlos Syndrome Research Foundation is to improve the care of people with Ehlers-Danlos Syndrome (EDS), Hypermobility Spectrum Disorder (HSD) and related disorders by 1) advancing innovative research on treatment modalities, efficacy, and delivery and 2) educating healthcare providers across disciplines on the diagnosis and management of this patient population.
Our Impact
Causes We Support
Countries We Serve
United Nations Sustainable Development Goals
The EDSRF is a medical research foundation that strives to improve the care of people with Ehlers-Danlos Syndrome (EDS), Hypermobility Spectrum Disorders (HSD) and related disorders in two ways: 1) by advancing innovative research on treatment modalities, efficacy, and delivery, and 2) educating healthcare providers across disciplines on the diagnosis and management of this patient population. EDSRF supports research to improve diagnostic or therapeutic care for people with EDS, 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. The EDSRF provides grant awards to researchers to support EDS medical projects, primarily in the US. The Foundation’s medical board includes leading global EDS experts in their respective specialties, including genetics, immunology, neurology, neurosurgery, orthopedic and preventive medicine. The Foundation funds research projects and awards external grants through a twice annual call for proposal process. The EDSRF supports these research projects by fundraising initiatives. In 2023, the Foundation is launching an outreach webinar series to help disseminate specialty-focused content by EDS healthcare experts to the patient community and healthcare workers. The goal of the webinar series is to provide information while raising the awareness of the Foundation, ideally resulting in more donations. The EDSRF expects to spend $300,000 in 2023 on operating costs, including multiple research projects and grants. The EDSRF currently has about $425,000 in cash assets. The foundation will continue to raise most of its funds from direct donor contact by board members and during the “giving” season at the end of the year. The EDSRF will also raise funds through online giving opportunities. The Foundation will send out periodic research updates and uses these communication opportunities to encourage donations too. In 2023 the staff and volunteers are developing a calendar of events for online awareness campaigns and plan to appeal to this target audience of patient community and caregivers for funding support. The EDS patient community is a large, passionate group of self-advocates. We intend to employ grassroot fundraising campaigns in the second half of 2023 in connection to the launch of our informational webinar series. 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. 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 need.
