Patient Insights Regarding Care in Rare Connective Tissue Disorders

We will soon be commencing a survey to better understand the experiences of patients diagnosed with rare connective tissue disorders such as Ehlers Danlos as they seek care, obtain care, and encounter various healthcare professionals.   The study will be open to US based patients who have been diagnosed with a rare connective tissue disorder, or their parent/legal guardian and is anticipated to begin mid-August, 2023.  Participants will be asked to complete an approximate 15 minute survey.   Please check back for details or visit Sign Up for Future Research if you would like us to contact you when the study begins.