NORD Breakthrough Summit 2022: Highly Anticipated Rare Disease Conference Announces Keynote Speakers, Session Topics

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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

WASHINGTON, DC, August 18, 2022 – The NORD® Rare Diseases & Orphan Products Breakthrough Summit® – the most highly anticipated, global rare disease conference of the year, every year – will be hosted on October 17 and 18, 2022 in Washington, DC.

NORD Summit begins with a Patient/Caregiver Opening Address to 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 diseases. This year’s address, “Finding Our Community,” will feature three speakers whose passion is for rare disease advocacy and sharing their strength with those on their own rare journeys.

  • Brittany Clayborne, MS, PsyD, is a mother, nonprofit founder, organ donor educator, and a stage 4 Post-Transplant Lymphoproliferative Disorder survivor.
  • Nakisha Isom is a support group leader, children’s book author, advocate, and one of seven members of her family living with Holt-Oram Syndrome.
  • Annie Papik is a researcher at CWRU School of Nursing by day and a fighter, caregiver, mom, and a rare undiagnosed disease advocate by night.

Returning to in-person sessions, Lunch & Learn discussion groups, networking opportunities, and poster presentations, the two-day Summit has just unveiled its full 2022 agenda, which features a diverse set of thought leaders, impactful resources, and key discussions on emerging issues, including accelerated approval, data sharing, patient voice at FDA and patient-focused drug development, and global and equitable access to health services.

The full conference agenda and pricing options are available at! Other expert speakers this year include:

  • James Baumberger, Senior Director, Federal Policy, American Academy of Pediatrics
  • PJ Brooks, PhD, Acting Director, Division of Rare Diseases Research Innovation, National Center for Advancing Translational Sciences (NCATS), NIH
  • Patrizia Cavazzoni, MD, Director, Center for Drug Evaluation and Research (CDER), US Food and Drug Administration (FDA)
  • Michelle Davis, Executive Director, International Fibrodysplasia Ossificans Progressiva Association
  • Kathleen Donohue, MD, Director, Division of Rare Diseases and Medical Genetics, CDER, FDA
  • Peter Marks, MD, PhD, Director, Center for Biologics Evaluation and Research (CBER), FDA
  • Vinaya Murthy, MPH, MS, LCGC, Assistant Professor of Clinical Medical and Molecular Genetics, Indiana University School of Medicine
  • Adora Ndu, PharmD, JD, Chief Regulatory Affairs Officer, BridgeBio Pharma
  • Jack Rollins, MPH, Director of Federal Policy, National Association of Medicaid Directors
  • Jeffrey Shuren, MD, JD, Director, Center for Devices and Radiological Health (CDRH), FDA
  • David Whiteman, MD, Vice President Research & Development; Global Program Leader, Rare Diseases Therapeutic Area Unit, Takeda Pharmaceuticals

This event is open to members of the pressTo register for a complimentary media pass, please contact Rohan Narayanan at [email protected].


About National Organization for Rare Disorders (NORD)
The National Organization for Rare Disorders (NORD) is the leading independent advocacy organization representing all patients and families affected by rare diseases in the United States. NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. Since then, the organization has led the way in voicing the needs of the rare disease community, driving supportive policies, furthering education, advancing medical research, and providing patient and family services for those who need them most. Together with over 330 disease-specific member organizations, more than 17,000 Rare Action Network advocates across all 50 states, and national and global partners, NORD delivers on its mission to improve the lives of those impacted by rare diseases. Visit