Ehlers-Danlos Syndrome (EDS)

 Ontario to set up clinic for people with rare disease EDS

Ontario to set up clinic for people with rare disease EDS

“People living with Ehlers-Danlos Syndrome and other rare diseases face enough challenges on a daily basis that finding the right care and support in Ontario shouldn’t be one of them. The new initiatives our government is pursuing will help people living with Ehlers-Danlos Syndrome and other rare diseases access the supports they need so they can receive the highest quality of care close to home.”
– Dr. Eric Hoskins, Minister of Health and Long-Term Care

“The establishment of the joint adult and pediatric EDS clinic is a big step forward in providing multi-disciplinary care and treatment for EDS patients in Ontario. This important model may also serve the needs of patients in the future who have similarly rare and complicated disorders. I am delighted that Minister Hoskins has supported the recommendations of the EDS Expert Panel.”
– Dr. James T. Rutka, Co-Chair, Ehlers-Danlos Syndrome Expert Panel, ILC Medical Adviser

Ehlers-Danlos Syndrome Awareness Month – ILC Letter to the Editor

Support for teens that live with pain requires an innovative approach in peer support programming. Peer support that allows them to feel less isolated, be able to talk with their own peer group about similar experiences, to learn and discover coping strategies, and really to just have fun and give them something to look forward to amidst the very hard moments.

Teens and young adult children that experience neuropathic pain sometimes leaves them feeling as though they wish they could take their skin off and these teens may get answers through the outcomes of innovative research:

Science of Stretch – The study of connective tissue is shedding light on pain and providing new explanations for alternative medicine.

To learn more visit:

With support from the Ontario Trillium Foundation grant we are developing the ILC On-Line Peer Support Network.

The ILC Difficult to Diagnose Disease Program for Ehlers Danlos Syndrome including co-morbidities of Postural Orthostatic Tachycardia Syndrome, Tethered Cord, Cervical Spin Instability, Chiari Malformation and other connective tissues disorders.

  • The ILC are building and working with a multidisciplinary team of medical professionals at McMaster for the development of the Difficult to Diagnose Disease Program for Ehlers Danlos Syndrome+ with a view to developing Best Care Practice Guidelines as a patient centric care model of excellence, fostering knowledge transfer on a national and international scale.
  • Dr. Peter Byers, M.D., Professor of Pathology and Medicine, Adjunct Professor of Genome Sciences, University of Washington is one of ILC’s Medical Advisory Board members and will play a key role in this initiative. Professor Byers is recognized as one of the world’s foremost Ehlers-Danlos Syndromes researchers. As you may know, David Freudmann, founded the Freudmann Family Ehlers-Danlos Syndromes Translational Research Fund at the University Of Washington’s (CRA recognized) medical research department.
  • ILC are also working with Dr. Fraser Henderson, M.D. Neurosurgeon with the Metropolitan Neurosurgery Group in Bethesda, for the Canadian Ehlers Danlos Syndrome Neurosurgery Training Program. We are working to identify a Canadian senior intern neurosurgeon that will attend this program in Maryland. Of Dr. Henderson’s patient base, approximately 85% have EDS+. Dr. Henderson’s expertise, interest and tenacity has allowed a quality of life for his patients, where at times, none would exist otherwise.

On October 4 – 5, 2013, the ILC are are hosting an international scientific workshop as a discussion to – Bridging Gaps: Expert Leadership and Vision to Establish Best Care Practice Guidelines for Complex Chronic Pain Disease – Where Quality of Life Meets The Art and Science of Medicine. The ILC have the unique and innovative position of facilitating the Difficult to Diagnose Disease Program to help bridge gaps in knowledge about Ehlers-Danlos Syndrome. Help support this critically important clinical research initiative and pledge your support today at Donations to the DDD Program will be used to co-fund this.

EDS Resources in Canada

For Parents


Adolescents 15-18


Young Adults 19-29


Medical Professionals

  • Chronic pain support for children, youth, and teens
  • Upcoming Events

    1. Halifax Support Group Meeting

      October 15, 2017 @ 10:00 am - 12:00 pm
    2. Simcoe/York Ehlers-Danlos Syndrome Peer Support Group Meeting

      October 21, 2017 @ 12:00 pm - 2:00 pm
    3. ILC 5th Annual Ehlers Danlos & Chronic Pain Conference

      November 4, 2017 - November 5, 2017
    4. Ontario Peer Support Meeting – Toronto, Ontario

      November 4, 2017 @ 12:00 pm - 3:00 pm
    5. Halifax Support Group Meeting

      November 12, 2017 @ 10:00 am - 12:00 pm
The ILC Foundation

The ILC Foundation