Accessible Rare Disease Treatments
Play • 45 min

Patients with rare diseases may soon have better access to treatments. A second installment to the 21st Century Cures Act is in the works that would make improvements to telemedicine and digital health regulations. Find out what this means for the rare disease community in this interview with Diane Berry, Ph.D. And hear Kate’s interview with Lan Sena, a healthcare advocate who has been battling Hodgkin’s lymphoma for the past ten years. 

Guest:

Diane Berry, Ph.D. Senior VP, Global Health Policy, Government and Patient Affairs, Sarepta Therapeutics

Diane joined Sarepta Therapeutics in December of 2011 and serves as Vice President, Global Policy, Government & Patient Affairs. She engages policymakers at the federal, state, and local levels, as well as patient advocacy organizations. She works to advance critical policies related to newborn screening, regulatory policy, and reimbursement and access, with the goal of expediting development and patient access to genetic-based therapies for rare diseases.

Previously, Dr. Berry served in leadership roles for the federal government in both the legislative and executive branches, overseeing and implementing science, technology and public health activities. She served as a Subcommittee Staff Director and Senior Professional Staff Member for the U.S. House of Representatives Committee on Homeland Security and as Chief Scientist and Senior Biodefense Advisor at the Department of Homeland Security inside its Office of Health Affairs. 

Dr. Berry was also a Senior Science Advisor at McKenna, Long, and Aldridge, and a Science and Technology Policy Advisor and Fellow within the Department of Defense through the American Association for the Advancement of Science.

Dr. Berry earned her Ph.D. in chemical engineering from Northwestern University and her B.S. and M.S. in chemical/biochemical engineering from Tufts University. 

Hosts:

Terry Wilcox, Executive Director, Patients Rising

Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.

Kate Pecora, Field Correspondent 

Links:

Diane Berry, Ph.D. 

Be The Match

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Patients Rising Concierge 

Need help?

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Have a question or comment about the show, want to suggest a show topic or share your story as a patient correspondent?

Drop us a line: podcast@patientsrising.org

The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.

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