Advancing Diagnosis of Rare Diseases: A Webinar
2025-11-06 11:00 - 13:00 (America/New_York)
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 will focus on:

Barriers that patients face in obtaining timely and accurate diagnosis
The role of emerging technologies and diagnostic innovations
Health professional education, care coordination, and interdisciplinary teamwork to reduce diagnostic delays
Policy and health system-level strategies to strengthen the diagnostic journey for patients with rare diseases

Visit the National Academies website for more information and to register!

Primary Care: The Unsung Heroes in Rare Disease Diagnostics
2025-10-30 12:00 - 13:00, 2025-10-10 12:00 - 13:00
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 and will discuss genetic basics, the benefits and limitations of genetic testing, and genetic testing available through UNC Health. Following a short presentation, a panel of MDs and genetic counselors from various specialties within UNC will be available for questions and expert opinions.
The event is eligible for CME credit and will take place twice:

Friday, October 10th from 12:00 PM – 1:00 PM
Thursday, October 30th from 12:00 PM – 1:00 PM

Event Agenda:

Virtual Presentation
Panelist Q&A
Survey

Presenter for October 30th event:

Dr. Muge Calikoglu (MD/MPH): Clinical Geneticist

Register here!
