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.
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
