Two rare disease patients and a rare disease advocate will be the keynote speakers at the National Organization for Rare Disorders (NORD) 2022 annual rare disease conference, being held at the Marriott Marquis in Washington, DC, on October 17 and 18, 2022.  

NORD announced the keynote speakers as Brittany Clayborne, MS, PsyD, a post-transplant lymphoproliferative disorder patient, Nakisha Isom, a Holt-Oram Syndrome patient and support group leader, and Annie Papik, a caregiver, rare disease advocate, and researcher at Case Western Reserve University School of Nursing in Cleveland, Ohio.

Their opening address will “underscore the event’s focus on individuals and families, and how the larger rare community can work together to improve the lives of those affected by rare disease,” NORD said in a press release.

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The conference will also feature speakers from organizations such as the American Academy of Pediatrics, the National Institute of Health, the US Food and Drug Administration (FDA), the International Fibrodysplasia Ossificans Progressiva Association, and the National Association of Medicaid Directors as well as representatives from pharmaceutical companies including BridgeBio Pharma and Takeda Pharmaceuticals.

Issues such as the accelerated approval of new potential drugs, data sharing, patient voices at the FDA, and global and equitable access to health services will be among the topics that will be discussed during the 2-day event. It will feature oral sessions, lunch & learn discussion groups, and poster presentations as well as networking opportunities.

NORD is an independent advocacy organization representing patients and families in the US living with a rare disease. Since 1983, NORD has been voicing the needs of the rare disease community and providing it with patient and family services as well as driving supportive policies, increasing education, and supporting medical research in the field of rare diseases to improve the lives of affected people.

Rare Disease Advisor will provide comprehensive coverage of the event.


NORD’s annual rare disease conference on October 17 and 18 in Washington, DC will showcase two days of insightful speakers, discussions, and in-person connection. New release. NORD; August 18, 2022.