Public Affairs and Patient Advocacy Leader Kim Isenberg Joins National Organization for Rare Disorders Board of Directors

NORWELL, Mass., Dec. 8, 2025 /PRNewswire/ -- The National Organization for Rare Disorders (NORD®), a leading rare disease patient advocacy organization, today announced the appointment of Kim Isenberg, a retired industry veteran with more than three decades of public affairs and patient advocacy experience, to its Board of Directors.

Isenberg is a veteran rare disease leader whose career spans the full ecosystem of progress, from health care policy and drug development to patient advocacy and the business strategies that bring new treatments to market. With this depth of experience, she brings a powerful, integrated perspective that enhances NORD's ability to drive meaningful impact.

"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. Her insight and passion will be invaluable as we work to improve the lives of the more than 30 million Americans affected by rare diseases," said NORD Chief Executive Officer Pamela Gavin.

Isenberg, who retired this year as Head of Global Public Affairs at Sanofi's Rare Blood Disorders unit, has extensive experience advancing patient access, shaping national advocacy and policy efforts, and building partnerships across industry, government, and nonprofit sectors.

"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 said.

Based in Minneapolis, Isenberg has focused extensively on rare blood disorders. 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 biopharmaceutical company Shire (later acquired by Takeda), where she partnered closely with bleeding disorder patient organizations

In addition to her advocacy work, Isenberg brings extensive board and governance experience. She has served on the boards of the University of Minnesota YMCA, the Cowles Dance Theatre, and Women Winning. She was a staff member of major public boards, including the University of Minnesota Board of Regents and the Metropolitan Council.

Isenberg holds a Bachelor of Arts in Speech Communication from the University of Minnesota.

To learn more about NORD, visit rarediseases.org.

To learn more about NORD's Board of Directors, visit rarediseases.org/about-us/board-of-directors/.

About the National Organization for Rare Disorders 
Founded in 1983, the National Organization for Rare Disorders (NORD®) is a leading independent, nonpartisan, nonprofit and patient advocacy organization dedicated to improving the health and lives of over 30 million Americans living with rare diseases. In partnership with more than 350 disease-specific member patient organizations, NORD drives progress in rare disease research, care, and policy. Learn more at https://rarediseases.org/

SOURCE National Organization for Rare Disorders (NORD®)