Advocacy

Leading advocates and experts share their experiences
The Origins of KIF1A.org

The Origins of KIF1A.org

Luke Rosen, founder of KIF1A.org talks about the origins if this rare disease patient organization to help collect data on children with KIF1A associated neurological disorder (KAND).

Advice to Newer Patient Groups

Advice to Newer Patient Groups

Kristin Smedley, founder of Curing Retinal Blindness Foundation (CRBF) discusses how she used social media and other tools to build her patient advocacy organization and her brand. CRBF is recognized as a leader in the blindness advocacy field, largely due to the relentless pursuit of its founder getting herself out to the community.

Patient Advocacy Podcast

Patient Advocacy Podcast

Kevin Freier, a former Pfizer executive, talks about his new podcast ‘Improbable Developments’ that interviews various patients and patient advocates in order to learn more about how they were about to raise awareness about their disease and/or get a medicine developed for their patient populations.

Orphan Drug Development, Pricing, and Access

Orphan Drug Development, Pricing, and Access

Dennis Jackman, Senior Vice President, Public Affairs at CSL Behring discusses rare disease drug pricing, patient involvement in the drug development process, and drug access.

Hemophilia Alliance: The Original Managed Care Plan

Hemophilia Alliance: The Original Managed Care Plan

Joe Pugliese discusses the Hemophilia Alliance, a not-for-profit organization of federally funded hemophilia treatment centers that is working to ensure its member have the expertise, resources and public support to sustain their integrated clinical and pharmacy services for persons with hemophilia and other bleeding disorders.

Diagnosing Congenital Hyperinsulinism

Diagnosing Congenital Hyperinsulinism

Julie Raskin, Executive Director of Congenital Hyperinsulinism International (CHI) explains how congenital hyperinsulism is diagnosed and the latest research is underway to improve how it is diagnosed and understood.

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