This research study aims to better understand patient experiences with accessing genetic counseling services for hypermobile Ehlers-Danlos syndrome (hEDS). The study will include a review of MUSC medical records to better understand referral patterns to genetic counseling services among patients with hEDS. Patients with hEDS will also be asked to complete a survey about their experiences with accessing genetic counseling services. Healthcare providers will be asked to complete a separate survey about their experiences referring patients with hEDS to genetic counseling services and potential factors that may influence the referral process. The surveys will take approximately 10-15 minutes to complete.

There are minimal risks to participants but may include possible loss of confidentiality or discomfort when answering questions related to healthcare experiences. There is no direct benefit to participants, but the information provided may help improve access to genetic counseling services for future patients with hEDS. Participation in the surveys is completely voluntary.

Sharing Our Stories: The Realities of Living with Ehlers Danlos Syndromes (EDS) is a research study to help better understand what it is like to live with EDS. Adults with EDS will complete a one-time video interview with a member of the research team. We hope to better understand the challenges adults with EDS face and learn from them things that make it more difficult and easier to receive care, what their needs are and recommendations for improving an earlier diagnosis, care, and treatment.

The purpose of this study is to create and maintain a registry, which is a database (a searchable collection of information) about children, adolescents and young adults with pediatric onset of rheumatic diseases. This data may help in the evaluation of the safety and benefit of medications that are prescribed to patients who have rheumatic diseases.