Advocacy

Leading advocates and experts share their experiences
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.

Rare Disease Education via Art

Rare Disease Education via Art

Patricia Welton has two daughters with Ehlers-Danlos syndrome. Her daughters had the disease for years before properly being diagnosed.

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