Kim Isenberg Joins NORD Board to Enhance Rare Disease Advocacy

The National Organization for Rare Disorders (NORD®) has appointed Kim Isenberg to its Board of Directors, strengthening its commitment to advocating for individuals affected by rare diseases. This announcement, made on December 8, 2025, highlights Isenberg’s extensive expertise in public affairs and patient advocacy, honed over a career spanning more than three decades.

Isenberg’s professional journey includes pivotal roles in health care policy, drug development, and patient advocacy. Her experience positions her uniquely to contribute to NORD’s mission of improving the lives of over 30 million Americans affected by rare diseases. According to NORD Chief Executive Officer Pamela Gavin, “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.”

In her most recent position, Isenberg served as Head of Global Public Affairs at Sanofi‘s Rare Blood Disorders unit. Throughout her career, she has focused on advancing patient access to treatments 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 the biopharmaceutical company Shire, which was later acquired by Takeda.

Isenberg expressed her enthusiasm for joining NORD, stating, “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.” Her passion for advocacy is complemented by her extensive governance experience, having served on various boards, including the University of Minnesota YMCA and the Cowles Dance Theatre.

Based in Minneapolis, Isenberg holds a Bachelor of Arts in Speech Communication from the University of Minnesota. Her appointment to NORD is expected to enhance the organization’s efforts in driving progress in rare disease research, care, and policy in collaboration with over 350 disease-specific member patient organizations.

Founded in 1983, NORD operates as an independent, nonpartisan nonprofit organization dedicated to improving the health and lives of those living with rare diseases. Through its advocacy and partnerships, NORD continues to be a leading voice for patients, addressing the challenges they face in accessing care and treatment.

For more information about NORD and its initiatives, please visit rarediseases.org.