NORD Strengthens Rare Disease Advocacy with New Leadership Appointments

The National Organization for Rare Disorders (NORD) has made significant strides in its advocacy efforts with the recent appointment of key leaders. Michael J. Beard has been named Vice President of Federal and Global Public Policy, while Cara Tenenbaum, JD, MBA, joins as Director of Regulatory Affairs. These new appointments are pivotal in enhancing NORD’s commitment to advancing policies that support the more than 30 million Americans affected by rare diseases, many of whom are children.

NORD's emphasis on enhancing its policy leadership reflects the organization's dedication to providing effective and coordinated advocacy strategies for patients and families. This is especially crucial as over half of the individuals living with rare disorders are children, highlighting the pressing need for robust advocacy efforts.

The leadership duo brings a wealth of experience and expertise that will fortify NORD's initiatives. Michael Beard boasts over 20 years of experience in various governmental roles, including key positions within Congress, the Department of Health and Human Services, and the United Nations Foundation. He will spearhead NORD’s federal and global policy strategy, working closely with policymakers and health advocates to prioritize the needs of patients and their families. Beard's previous work has involved bipartisan policy initiatives and coordinated global health strategies essential for improving health outcomes.

On the other hand, Cara Tenenbaum's extensive background at the FDA and her role as a trusted advisor to patient organizations make her an asset. She will lead NORD's regulatory policy efforts, ensuring that the pathway to developing and accessing effective treatments is as streamlined as possible. Tenenbaum's aim is to enhance the organization's capacity to promote safer and more efficient treatment options for individuals living with rare diseases.

Chief Executive Officer Pamela Gavin expressed confidence in the new appointments, stating that they would greatly elevate NORD’s efforts on behalf of the rare disease community.