APFED was honored to receive a scholarship to attend the 2019 NORD Rare Diseases and Orphan Products Breakthrough Summit that was recently held in Washington, D.C. The two-day conference enabled attendees to engage with leaders on key issues of importance to the rare disease community.
Sessions included but were not limited to topics specific on patient-focused drug development, gene therapy, drug pricing, patient registries, social media platforms, and how emerging technology can advance rare disease. The agenda featured speakers from the FDA, NIH, patient advocacy groups, industry, and academia.
Several rare disease research posters were displayed and exhibitors engaged with attendees throughout the meeting. The Summit also provided the means for patient advocates to connect and offer support to one another and to share information.
“It was an inspiring meeting and the speakers brought so much to the table,” said APFED Executive Director Mary Jo Strobel, who attended the event. “Some of my key takeaways from the Summit are that stakeholders are keeping what is best for the patient top-of-mind, and that patient voice and perspective, as well as collaboration with patient advocacy groups, are critical to advance diagnostics and treatments.”
You may read more about the Summit in this
post-event wrap-up from NORD,
The 2020 NORD Summit is scheduled to take place next October 8-9 at the Marriott Wardman Park in Washington, DC.
Mary Jo Strobel, APFED and Sarah Chamberlin, National PKU News both work in support of the Medical Nutrition Equity Act. Annual NORD Summit, at Marriott Wardman Park, Washington, D.C., on Monday, October 21, 2019. John Boal Photography
Annual NORD Summit, at Marriott Wardman Park, Washington, D.C., on Monday, October 21, 2019. John Boal Photography