From September 7-9, 2023, the Rare Fair was held in Research Triangle Park, North Carolina, and was also available for attendance online. This event began in 2018 and has been spearheaded by The Dash Alliance. This year’s iteration was also co-hosted by Rare Revolution Magazine, a publication focused on rare diseases. Patient Worthy had the privilege to attend this year’s event and provide coverage on social media.
The agenda for the Rare Fair included panel discussions with patients and caregivers, talks from experts in the local area, which is a hotspot of medical research, and a special ‘Junior Edition’ day on the 9th which was aimed to engage with youth and child patients. Rare disorders disproportionately impact children, especially genetic conditions.
Some of the topics of discussion during the event included:
- The Rare EcoSystem – Collaborating with Diverse Stakeholders to Achieve Common Goals
The rare disease orbit involves a wide range of different concerned parties, such as patients, their families, doctors, researchers, regulators, and pharmaceutical companies. This conversation was focused on how these stakeholders can work together effectively and the importance of centering the concerns of patients in all areas.
- Longitudinal Care of Pediatric Patients with Complex Diseases – From Symptoms to Diagnosis and Beyond
This session highlights the challenges of complex, rare disease care under current health systems and industries. One of the main focuses of this session was the diagnostic odyssey, in which the majority of rare disease patients experience severe delays in diagnosis. Presenters discussed the need for genetic testing to be employed more quickly, as this field continues to evolve.
- Newborn Screening: Advancements and Opportunities
Focused primarily on the current state of newborn screening technologies and upcoming improvements and advancements, both in the state of North Carolina and beyond.
- From Rare Disease Mom to Full-Time Advocate
Dr. Kim Stephens, Executive Director of the Muenzer MPS Research & Treatment Center, shares her personal journey becoming a dedicated rare disease advocate after facing a rare diagnosis in her child.
This is just a small sample of the wealth of topics discussed at the Rare Fair 2023. Stay tuned for more reporting from Patient Worthy about this rare disease community event.
