This registry for people with hypermobile Ehlers-Danlos syndrome (hEDS) or Hypermobile Spectrum Disorder (HSD) collects information on symptoms, quality of life, and diagnostic experiences. The data will help researchers better understand how these conditions develop over time, vary across populations, and impact daily life.

We are currently publishing data collected during our Omics study- analysis of small molecules from blood and gene expression from skin of people with hEDS. Recent publications include hormone observations and phenotype clustering and future publications will include studies of autoantibodies, observed changes to the nervous system and lipids. We wish to thank The Milton and Tamar Maltz Foundation for funding for many of our projects but their support for our postdoctoral researcher Dr. Sarrah Hannon.

The MARC‑EDS Hypermobility Research Webinar is a yearly event that provides updates on current research projects and recent developments related to symptomatic hypermobility. The webinar includes an overview of MARC‑EDS for those who are new or newly diagnosed, updates on clinical care and diagnosis guidelines, and highlights from ongoing research projects. The session is intended for individuals with hypermobility, families, and others interested in current research and care updates