The UNC Rare Disease Network is hosting an upcoming virtual event for primary care providers: “Primary Care: The Unsung Heroes in Rare Disease Diagnostics” This virtual, interactive event focuses on the diagnostic odyssey and how genetic testing can be implemented to help clinicians better support patient care. The presentation is geared towards primary care providers … Read more
The UNC Rare Disease Network is hosting an upcoming virtual event for primary care providers: “Primary Care: The Unsung Heroes in Rare Disease Diagnostics” This virtual, interactive event focuses on the diagnostic odyssey and how genetic testing can be implemented to help clinicians better support patient care. The presentation is geared towards primary care providers … Read more
Over 20 million people in the U.S. live with a rare disease, and many face years of uncertainty and delayed diagnosis. The National Academies’ Forum on Advancing Diagnostic Excellence will host a public webinar on November 6 exploring opportunities to improve rare disease diagnosis and the patient journey towards a timely and accurate diagnosis. Discussions … Read more
The National MPS Society will host a timed 5K run and 1 mile walk, beginning at 9 AM on Saturday, March 28. The 1 mile walk will begin at 9:05 AM. Packet pickup and day of registration will open at 7:30 AM. A picnic for attendees and volunteers will be held after the race! This … Read more
Uplifting Athletes is a national nonprofit that harnesses the power of sport to invest in the lives of individuals and families impacted by rare disease (both children and adults). They are excited to invite rare individuals and families to join us for a one-of-a-kind bowling event at Bowlero Durham with the UNC Football Team on … Read more