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It’s estimated that more than 126,000 Canadians live with hypermobile Ehlers-Danlos Syndromes (hEDS).
Regardless of a diagnosis, EDS Canada is here to support you through your journey.
EDS Canada Foundation is a CRA registered charity, operating under The ILC Charitable Foundation, serving the Canadian Ehlers-Danlos Syndromes (EDS) and chronic pain community. We are the national advocate for those affected by this hereditary and complex disease. Established in 2010, we have worked collaboratively with regional and international organizations to bring health care research, education, and clinical care together to ensure those affected by EDS have access to the latest advances in care.
By engaging in activities aligned to EDS Canada Foundation’s core programs (Awareness, Support Services and Research) we:
EDS Canada Foundation organizes and funds the following programs in support of its strategy to raise awareness about Ehlers-Danlos Syndromes/Hypermobility Spectrum Disorders affecting 1 in 500 Canadians and the 1 in 5 living with chronic pain, and children are not spared. For more information on the conditions, we financially support, please learn more below. For Resources and Programs for these conditions, please visit our Support Services tab.
Ehlers-Danlos Syndromes (EDS) are a group of rare inherited conditions that affect connective tissue. Connective...
Chronic pain is pain that does not go away after three months. Chronic pain can be persistent and varying in degrees of...
EDS Canada Foundation Conference is for primary care practitioners and physician specialists who encounter patients with complex health issues and chronic pain that may or may not be related to Ehlers-Danlos Syndromes, Hypermobility Spectrum Disorders (EDS/HSD+).
Conference presentations are available under our Videos on the Conference page under the Medical Professionals tab.
Have a Story to share?
Sharing your personal story helps strengthen our community, raise awareness, and support ongoing advocacy to improve access to care. If you feel comfortable, we would be honoured to share your story on the EDS Canada Foundation website and in our newsletter.
Please use this form to submit your story. This process helps us ensure your information is handled with care, transparency, and respect, in accordance with Canadian privacy laws.
Together, by sharing our experiences, we build understanding, connection, and lasting change.
Tomas Ponzilius, who lives with Ehlers-Danlos syndrome, says he’s considered medically assisted death Alicia Wang · Alicia Wang · Posted:
My sister was first diagnosed a few years ago after years of struggling with various symptoms. After she informed us
EDS Canada Foundation was established to help those living with Ehlers-Danlos Syndromes and related conditions, including Chronic Pain. Please contact us to learn more.
