SEDQc/Constellation-THTC, Syndrome d’Ehlers Danlos Quebec/Constellation- THTC
Québec, Canada
About this Group
Syndrome d’Ehlers-Danlos Quebec was created in 2020 when we created a Facebook page and a Facebook support group to help people with Ehlers-Danlos Syndrome. Our activities evolved to become registered non-profit organization now called Constellation – Troubles Héréditaires du Tissu Conjonctif / Constellation – Hereditary Connective Tissue Disorders (HCTD) and Syndromes d’Ehlers-Danlos Québec (SEDQc) is now a subsidiary. We remain actively involved with Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorders (HSD) and continue to primarily support the EDS and HSD communities through our work, which is still growing.
SEDQc/Constellation-THTC’s mission is to improve the quality of life for individuals living with EDS and HSD through information and awareness campaigns aimed at healthcare professionals and the general public, advocacy and rights defense activities, and contributions to scientific research. Our services are provided in French for French-speaking Canadians. Since 2021 we have been offering virtual meetings. Our support group continues to form a community focused on mutual assistance, sharing, and the empowerment of individuals. It continues to primarily support the EDS and HSD communities through our work, which is still growing. We now have over 600 members in our support group, and this number continues to grow, reflecting the steady expansion of our community.
The support group’s name has transitioned from “Groupe de soutien SEDQc” to “Soutien THTC (Ehlers-Danlos, Marfan, Stickler, Cutis laxa, Larsen, etc.), ” while preserving its members and its supportive community.
Meeting Schedule
We are using the Zoom platform for our virtual meetings. Virtual meetings are for our support group members only. Members must register by email.
- Support Group
- Charity Organization
- This group holds virtual meetings
- This group holds virtual support groups
