What’s Happening in Hypermobile Ehlers-Danlos Syndrome
Our hEDS program is dedicated to improving the lives of individuals living with hypermobile Ehlers-Danlos syndrome through education, research, and community engagement. We work to increase awareness, support earlier diagnosis, and connect patients and families with helpful resources. By partnering with healthcare professionals and advocates, we are building a stronger future for the hEDS community.
Learn more about our projects below and see how we're making an impact.
Natural History Registry of Hypermobile Ehlers Danlos Syndrome and Hypermobility Spectrum Disorder
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.