Research

The Ehlers-Danlos Society supports research for the Ehlers-Danlos syndromes, hypermobility spectrum disorders, and related disorders. We also aid in the development of external research through recruitment assistance.

Our current projects are listed below. We regularly announce calls for research applications. Please keep an eye on this page for regular updates.

Join us! Help us advance EDS and HSD research, awareness, and support—worldwide!

ACTIVE RESEARCH

HYPERMOBILE GENETIC RESEARCH NETWORK

Consisting of leading authorities in fields ranging from human genetics to neurosurgery, the Hypermobile EDS Genetic Research Network will function as the nucleus for research design, data collection and analysis during the course of the genomic mapping.

EDS COMORBIDITY COALITION

The Ehlers-Danlos Society is using the funds provided through PCORI’s Pipeline to Proposal Awards program to build a partnership of patients, researchers, and other stakeholders who are focused on addressing the common health issues associated with this group of high morbidity, high-disease-burden conditions, leading to the development of a patient-centered research proposal. The coalition will help to develop partnerships, governance infrastructure, channels of communication, and an outreach plan which will form a solid foundation for future collaborative work.

NUTRITION AND EDS

Good nutrition is essential for connective tissue repair and general healing. Certain nutrients are needed for the body to make collagen and support connective tissue function. Identifying specific nutrients needed for connective tissue function is important.

This study will trial a diet-based nutritional intervention, to determine whether symptoms can be reduced in adult hEDS patients. This intervention has the potential to improve quality of life of patients with hEDS, through simple, inexpensive but effective dietary measures, while reducing treatment costs.

The principal investigators are Professor Qasim Aziz and Lisa Jamieson at the Wingate Institute of Neurogastroenterology, Barts & The London School of Medicine & Dentistry, Queen Mary University of London.

MICROGRANTS

The Ehlers-Danlos Society” funds research at all stages, scopes, and scales. Our microgrants provide funds to early stage investigations primarily designed to provide proof of concept for larger studies. Current investigations include research into chronic pain, dentition, body awareness therapy, and TNX deficiency.

COMPLETED RESEARCH

2017 International Classification for The Ehlers-Danlos Syndromes

The Ehlers-Danlos Society supports the work of the International Consortium on the Ehlers-Danlos Syndromes and Related Disorders. The initial result of this ongoing collaboration was the 2017 International Classification for The Ehlers-Danlos Syndromes.

SHARE A SURVEY

Researchers are welcome to apply to share their surveys with the Ehlers-Danlos Society’s patient and caregiver communities. If you have a survey in need of recruits, submit your request here.

OTHER GLOBAL EDS RESEARCH

For additional research into the Ehlers-Danlos syndromes, hypermobility spectrum disorders, and other related research areas, please visit here.

GIVE TODAY

DONATE

With your help, The Ehlers-Danlos Society and our affiliated scientific researchers and medical professionals are preparing the next phases of Ehlers-Danlos research. We are determined to bring hope to those living with Ehlers-Danlos syndromes and related disorders. With each new discovery, their lives and the lives of their families will improve through better, more consistent diagnosis, management, and care.

Our strength begins with hope. And our hope begins with you.

Donating to our research fund is easy. Your designated gift will be put into a secured research fund (verified through yearly independent financial audit), and only used to support research initiatives such as those described below. Any amount helps, and on behalf of those of us with EDS, deeply appreciated.