Acting FDA Commissioner Kyle Diamantas, NIH Director Jay Bhattacharya, and Director of National Health Communications for the Office of the Surgeon General Stephanie E. Haridopolos to Address 900+ Attendees at the Nation’s Largest and Longest-standing Rare Disease Event
WASHINGTON, D.C. and NORWELL, Mass., September 29, 2026 — Three of the nation’s leading federal health officials will join more than 900 rare disease leaders across patient advocacy, industry, policy, science and medicine at the 2026 NORD® Rare Diseases and Orphan Products Breakthrough Summit®, October 25–27 in Washington, D.C. View the complete agenda and register to attend at: NORDSummit.org.
Kyle Diamantas, J.D., Acting Commissioner of Food and Drugs at the U.S. Food and Drug Administration; Jay Bhattacharya, M.D., Ph.D., Director of the National Institutes of Health; and Stephanie E. Haridopolos, M.D., DABFM, Director of National Health Communications for the Office of the Surgeon General and Principal Deputy Assistant Secretary for Health Policy, will take the stage at the 16th annual NORD Breakthrough Summit, joining leaders across sectors to tackle the most pressing challenges and opportunities for scaling solutions for the more than 30 million children and adults living with rare diseases.
“Rare disease is at a pivotal moment, and it is important for our community to hear directly from the federal leaders helping shape what comes next,” said Pam Gavin, Chief Executive Officer of NORD. “Their presence at the NORD Breakthrough Summit reflects our longstanding partnership and continued collaboration with the FDA, NIH and Office of the Surgeon General, as well as their commitment to the rare disease community. The work they lead across research, regulation and public health is critical to building on today’s scientific breakthroughs and translating that progress into meaningful advances for people living with rare diseases.”
FDA Acting Commissioner Kyle Diamantas
As Acting Commissioner of Food and Drugs, Diamantas leads the agency responsible for regulating the drugs, biologics, medical devices, and diagnostics that are critical to advancing care for people living with rare diseases. In one of his first actions, Acting Commissioner Diamantas organized a roundtable with rare disease advocates, including NORD, to hear directly how FDA can better meet the challenges of the rare disease community. His participation will provide an opportunity to hear directly from FDA leadership about the regulatory priorities and pathways shaping the future of rare disease innovation.
NIH Director Jay Bhattacharya
As Director of the National Institutes of Health, Bhattacharya oversees the nation’s premier biomedical research enterprise and its role in advancing the scientific discoveries that underpin new diagnostics, treatments, and cures. From the use of artificial intelligence and machine learning in electronic health record data to public-private partnerships developing platforms and standards for use of gene-targeted therapies to speed the development and delivery of gene therapies for rare diseases, NIH is at the forefront of the cutting-edge science central to rare disease breakthroughs. Dr. Bhattacharya’s perspective is critical in understanding how the different centers at NIH are working together to support adults and children with one or more rare diseases.
Director of National Health Communications for the Office of the Surgeon General and Principal Deputy Assistant Secretary for Health Policy, Stephanie E. Haridopolos
Haridopolos brings a longstanding commitment to rare diseases to her role in the Office of the Surgeon General. At the Summit, she will speak on her work around Newborn Screening and will be presented with NORD’s 2026 Rare Impact Award® for Policy Changemaker. In 2025, two rare diseases, Duchenne muscular dystrophy and metachromatic leukodystrophy, were added to the Recommended Uniform Screening Panel (RUSP), an effort Dr. Haridopolos played a key leadership role in advancing. Dr. Haridopolos has also been a critical contributor to the Newborn Screening Working Group, which will systematize how the RUSP will work and expand opportunities for earlier diagnosis and intervention for children with rare diseases.
The Summit will also feature a federal regulatory panel with senior representatives from FDA’s Center for Drug Evaluation and Research (CDER), Center for Biologics Evaluation and Research (CBER), Center for Devices and Radiological Health (CDRH), and Rare Disease Innovation Hub, bringing together perspectives across drug, biologic, cell and gene therapy, device and diagnostic development.
For the more than 30 million Americans facing a rare disease diagnosis, this is a significant moment. Advances in science are creating new possibilities for earlier diagnosis and treatment, while emerging technologies and new approaches to therapeutic development are challenging the nation’s research, regulatory and healthcare systems to keep pace. The participation of these three federal health leaders reflects the importance of working across government, research, medicine, industry and the patient community to translate scientific progress into faster diagnoses, more treatments and better outcomes for the 1 in 10 Americans with a rare disease.
Now in its 16th year, the NORD Breakthrough Summit is the nation’s premier gathering dedicated to rare diseases and orphan products. The 2026 Breakthrough Summit will convene over 900 diverse stakeholders needed to advance progress across research, therapeutic development, clinical care, policy and patient access. To register and see the full agenda and additional Summit information, visit: NORDSummit.org
About the National Organization for Rare Disorders (NORD®)
Founded in 1983, the National Organization for Rare Disorders (NORD®) is a leading independent nonprofit nonpartisan organization dedicated to improving the health and lives of more than 30 million Americans with rare diseases. In partnership with more than 350 disease-specific member patient organizations and a Rare Disease Centers of Excellence network spanning more than 170 medical and research institutions and children’s hospitals, NORD advances care, research, education, and advocacy on behalf of the greater rare disease community. Learn more at rarediseases.org.
Media Contact:
Cheryl Herbert
Vice President, Marketing & Communications
[email protected]/719-330-4053
