Ehlers-Danlos Syndrome Research Foundation

What is Ehlers-Danlos Syndrome?

Ehlers-Danlos Syndromes (EDS) are heritable disorders in which the body’s connective tissue lacks structural integrity.

People with EDS suffer from a range of systemic problems, including widespread pain, frequent joint subluxations or dislocations, and gut and nervous system dysfunction. If untreated, EDS can be highly limiting — even disabling. Current estimates suggest 1 of every 2500-5000 people has EDS; since misdiagnosis is common, we believe the actual number is much higher. In addition to struggling to get a diagnosis, people with EDS often lack access to proven, affordable treatments.

  • Vision

    Patients with EDS/HSD are diagnosed promptly and able to access affordable and effective care across multiple organ systems and health institutions.

  • Mission

    EDSRF improves care of people with EDS / HSD and related disorders by (i) advancing innovative research on treatment modalities, efficacy, and delivery and (ii) educating healthcare providers across disciplines on the diagnosis and management of this patient population.

  • Medical Board

    Dr. Alissa Zingman, MD, MPH

    Dr. Clair Francomano, MD

    Dr. Fraser Henderson, MD

    Dr. Anne Maitland, MD, PhD

    Dr. Ilene Ruhoy, MD, PhD

  • Executive Board

    Jennifer Berman, JD, MBA

    Misia Van Arsdale, MBA

    Jessika Auerbach, MFA

    Dr. Alissa Zingman, MD, MPH

Committee Chairpersons

Neurological Surgery
Dr. Fraser Henderson, MD

Mast Cell/Immunological
Dr. Anne Maitland, MD

Genetics
Dr. Clair Francomano, MD

Musculoskeletal/Orthopaedic
Dr. Alissa Zingman, MD, MPH

Dysautonomia/Neurological Manifestations
Dr. Ilene Ruhoy, MD, PhD

Pain Management
Dr. Linda Bluestein, MD

Temporomandibular Joint/Dental
Dr. Jeffrey Brown, MD

  • Ehlers-Danlos Syndromes (EDS) Research Foundation
  • Ehlers-Danlos Syndromes (EDS) Research Foundation