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Because your voice matters.

Patient Partner Input Needed for Hypermobile Ehlers-Danlos Syndrome (hEDS) Study

Posted • Last updated


Open to Provincial Region

Last updated

Patient Partner with Hypermobile Ehlers-Danlos

Health Areas
Genetic Counseling, Genetic Disorders, Other Genetics, Other Mental Health , Other Bones, Joints, Muscles

Opportunity Purpose
We are looking for patients with Hypermobile Ehlers-Danlos Syndrome (hEDS) to provide input based on their own lived experiences. Through patient input we hope that our study can target the aspects of hEDS that are most important to those living with it, especially as it relates to mental health and improving access to mental health supports. Patient partners help to ensure our research is done in a respectful, inclusive and applicable way.

We would like to meet directly with the patient partner to hear the ways in which they feel hEDS has most affected their life and any challenges experienced in accessing (mental) health care supports. The patient partner would contribute to designing an intervention to address these issues and study the outcomes. As the study progresses, we would also like feedback on proposed study design to ensure we are addressing patient needs.

Age: 18 Years – 100 Years Old

From Our Community

Lucie Neliba

Patient Partner, Surrey

Lucie Neliba

The Patient Voices Network has connected me to a community with the same drive to bring person- and family-centred care to the forefront. I am grateful for all opportunities I have been a part of thanks to PVN, which positively impacts patients like my sister and their caregivers. No matter how small, all patient engagement will help shape the future of health care and that I can stand behind