Rare Disease in the News

Rare Disease is in the news! In Focus, a Spectrum News public affairs program, will feature North Carolina rare disease experts on Sunday, April 5, 2020 at 11:30 am. Loretta Boniti, host of In Focus, will interview Tara Britt about building rare disease coalitions and Parvathy Krishnan about patient advocacy. Additional program guests include medicalContinue reading “Rare Disease in the News”

Rare Disease Day 2020 at Syneos Health

The Rare Disease Innovations Institute was honored to participate in the 2nd Annual Rare Disease Day Symposium hosted by Syneos Health in Research Triangle Park. Attendees filled the conference room and heard presentations ranging from product development and funding to diagnostic and clinical challenges. Every topic focused on the great needs within the rare diseaseContinue reading “Rare Disease Day 2020 at Syneos Health”

Rare Disease Day 2020 at IQVIA

Rare Disease Day 2020 kicked off in Raleigh/Durham, NC with a packed house at IQVIA, who hosted “Patient Perspectives on Clinical Research in Rare Disease” for their employees. The panel of patients and patient advocates was co-moderated by Dr. Jeffrey Keefer, Head of the Pediatric and Rare Disease Center of Excellence at IQVIA and TaraContinue reading “Rare Disease Day 2020 at IQVIA”