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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.
Details
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.
Eligibility
Age: 18 Years – 100 Years Old
