Images From the Philadelphia Member Organization Regional Meeting
In September, NORD met with nearly 50 representatives from NORD's patient organizations in the fourth in a series of regional patient organization meetings. The topics of the day focused on advocacy, research, policy updates, connecting patients, and looking towards future opportunities with the increased interest in orphan product development. NORD plans on continuing these regional meetings and providing more opportunities for member organizations to connect through webinars and other programs in the coming months.
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Mary Cobb, NORD's Senior VP of Membership and Organizational Strategy welcoming everyone to the meeting |
Peter L Saltonstall, NORD's President provides an update on NORD's activities |
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Pamela Gavin, NORD's Senior Vice President, providing an update on NORD's patient assistance programs |
Policy in Action Panel: From Left to Right Jennifer Lemmerman- National Brain Tumor Society, Ron Bartek- Friedreich’s Ataxia Research Alliance, Miriam O’Day-Alpha-1 Assciation, and Jason Barron-NORD |
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Participants at the meeting |
Connecting and Sharing Through Patient Voices Panel: From Left to Right Mirta Avila Santos- American Behcet’s Disease Association, Estelle Benson-GBS-CIDP Foundational International, and Henry Brehm- NephCure Foundation |
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Role of Patient Organizations in Accelerating Research Pat Furlong- Parent Project Muscular Dystrophy, Ron Bartek- Friedreich’s Ataxia Research Alliance, Mary Cobb- NORD, Megan O’Boyle- Phelan-McDermid Syndrome Foundation, Marshall Summar- Children’s National Medical Center, and Anna Kole- NORD |
Dr. Summar, NORD Board Member and Chief, Genetics & Metabolism Children’s National Medical Center presented on key learnings from the Urea Cycle Consortium |
