Kim Isenberg Joins NORD Board to Champion Rare Disease Advocacy

The National Organization for Rare Disorders (NORD®) has appointed Kim Isenberg to its Board of Directors, enhancing its commitment to advocacy for the rare disease community. This announcement was made on December 8, 2025, as Isenberg brings over three decades of experience in public affairs and patient advocacy to the organization.

Based in Norwell, Massachusetts, NORD is a leading advocate for the more than 30 million Americans living with rare diseases. Isenberg’s career has spanned multiple facets of health care, including policy, drug development, and patient advocacy. Her extensive background positions her uniquely to advance NORD’s mission of improving health outcomes for those affected by rare conditions.

Pamela Gavin, Chief Executive Officer of NORD, expressed her enthusiasm about Isenberg’s appointment, stating, “Kim Isenberg has spent her career ensuring that rare disease communities are heard and that the systems shaping their care are responsive to their needs.” Gavin emphasized that Isenberg’s insight and passion will be invaluable as NORD continues its work to improve the lives of patients.

Isenberg retired earlier this year from her role as Head of Global Public Affairs at Sanofi‘s Rare Blood Disorders unit. Throughout her career, she has been instrumental in advancing patient access and shaping national advocacy efforts. Her previous roles include Vice President of Policy, Advocacy, and Government Education at the Hemophilia Federation of America and Head of U.S. Field Advocacy at Shire, which was later acquired by Takeda.

Her contributions extend beyond advocacy work. Isenberg has a wealth of board and governance experience, having served on the boards of various organizations, including the University of Minnesota YMCA and the Cowles Dance Theatre. Additionally, she was a staff member of significant public boards, including the University of Minnesota Board of Regents and the Metropolitan Council.

In her own words, Isenberg remarked, “I am deeply honored to join NORD’s Board of Directors and to contribute to the critical work of elevating patient voices, driving thoughtful health policy, and creating collaborative solutions that improve outcomes for the entire rare disease community.”

Isenberg holds a Bachelor of Arts in Speech Communication from the University of Minnesota. Her commitment to serving patients will play a vital role in NORD’s ongoing initiatives alongside its network of over 350 disease-specific member patient organizations.

Founded in 1983, NORD is dedicated to improving the health and lives of individuals with rare diseases. By driving progress in research, care, and policy, the organization continues to be a pivotal force in addressing the needs of patients and their families. For more information on NORD and its Board of Directors, visit rarediseases.org.