April 14 – April 15, 2026
Arlington, VA
April 14 – April 15, 2026
Arlington, VA
Dates and location for the 2027 conference coming soon
Register Now
Rare disease breakthroughs don’t happen in isolation—they require collaboration, innovation, and a united commitment to progress. That’s why the NORD® Rare Disease Scientific Symposium is bringing together a dynamic community of researchers, clinicians, industry leaders, and advocates to spark the conversations and connections that drive science forward.
This immersive, 1.5 day event is designed to push boundaries and bridge gaps across the rare disease landscape through engaging case studies, interactive panel discussions, and extended audience Q&A.
Let’s break barriers and build progress—together.
NORD is proud to honor Dr. Susan Berry and Dr. Stephen Kingsmore as Rare Impact Award® recipients for their transformative impact on rare disease care and innovation.
Dr. Susan Berry is a nationally recognized leader in medical genetics whose work has transformed care for people with rare diseases across clinical practice, research, and public health. At the University of Minnesota, she helped pioneer coordinated, lifelong care models and led major initiatives like the IBEM-IS registry, advancing understanding and outcomes for inherited metabolic disorders. A dedicated advocate and mentor, her influence has shaped newborn screening, patient-centered care, and rare disease policy nationwide.
Dr. Stephen Kingsmore is a pioneering physician-scientist whose work has transformed the diagnosis and treatment of rare genetic diseases, helping bring precision medicine into clinical care. A leader in rapid whole genome sequencing, he advanced life-saving genetic testing for critically ill infants and developed platforms like BeginNGS to expand newborn screening and treatment at scale. His innovations, mentorship, and advocacy have significantly broadened access to genomic medicine for children and families worldwide.
Learn about emerging research methodologies, data sources, and case studies that can benefit all rare disease research.
Join thought-provoking discussions with regulators and leaders in rare disease research and clinical practice.
See how research strategies and collaborations can fortify and sustain your work in a rapidly shifting landscape.
When you sponsor the NORD Scientific Symposium, you are helping to create new pathways for progress and tackle some of the toughest challenges in rare disease research. Contact us to learn about opportunities to be a part of this event and boost your company's visibility.
Request Sponsorship ProspectusLocation for the 2027 NORD Rare Disease Scientific Symposium coming soon.
If you are a member of the media, please contact [email protected] to register.
Chief Executive Officer
Children's Tumor Foundation
Assistant Professor of Pediatrics, Division of Medical Genetics
Duke University School of Medicine
Director of Research
Malan Syndrome Foundation
Medical Director, Lysosomal Storage Disorders, US Medical
Takeda Pharmaceutical Company
Section Head, Neuro-Oncology
Ann and Robert H. Lurie Children’s Hospital of Chicago
Executive Medical Director, Clinical Sciences
Regeneron
Head of North America Medical Affairs
Chiesi Global Rare Disease