Pregnancy and Loss- Letter to EDS Canada to help others
February 9, 2026
I am writing to share my experience as a patient with diagnosed Hypermobility Spectrum Disorder (HSD) in the hope that
Diagnosis can be the longest detective mission.
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.
About Us
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:
- Develop community of practice patient education and bring people together in peer-to-peer support
- Deliver Wellnes Support Services
- Grant research funds; and collaborate on external research projects
- Increase awareness of EDS through annual campaigns
- Advocate
What We Support
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
Ehlers-Danlos Syndromes (EDS) are a group of rare inherited conditions that affect connective tissue. Connective...
Chronic Pain
Chronic pain is pain that does not go away after three months. Chronic pain can be persistent and varying in degrees of...
Conference News & Registration
EDS Canada Foundation Annual 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 Annual Conference page.
Latest News and Client Stories
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.
Ontario refuses to help woman with rare disorder that leaves skull detached from spine
February 9, 2026
Retrieved from: https://www.blogto.com/city/2025/12/ontario-refuses-help-woman-rare-disorder/ A Toronto woman has spent the bulk of her adult life suffering from a debilitating disorder, and
Get Involved
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.