Fibromuscular Dysplasia Society of America Inc

Patient Registry: In 2007, the Fibromuscular Dysplasia Society of America (FMDSA) began a data registry with the goal of increasing understanding of FMD. The goals of this registry are to identify patient characteristics associated with FMD, potential markers of the disease, and commonly used imaging and treatment modalities. The Michigan Clinical Outcomes Research and Reporting Program is the coordinating center for the registry. Over the past year enrollment slowed due to the pandemic. We ended the year with over 3,750 participants in the registry.Researchers have identified genetic variants that are associated with FMD. The genes PHARCTR1, ATP281, LRP1, and LIMA1. In 2022, Ottowa Hospital in Ontario Canada became our first international center and for this reason the name of the registry was changed to The North American Registry for Fibromuscular Dysplasia.

Patient Support:Patient support is a large program, due to the increase in patients diagnosed with FMD. Due to the demand, we have continued to grow the Volunteer Support Network. These volunteers have been identified in the US and internationally. Many groups have evolved to the point of holding local meetings. We also offer support through social media platforms including Inspire, Instagram and Facebook where we have thousands of patients participating. We are also active on Twitter allowing patients, clinicians and physicians to communicate. We continue to add FMD materials and videos to our website and YouTube channel We offer FMD materials in Spanish and Japanese and work with our international colleagues who offer materials in many languages. Finally, FMDSA continue to host and participate in patient meetings but due to the pandemic these meetings have been via Zoom. Patients globally are invited to participate.