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. With regard to the latter issue, Jackman said, “if the community and industry,...

Hemophilia Alliance: The Original Managed Care Plan

  “We are almost like the original managed care plan,” stated Joe Pugliese of the Hemophilia Alliance. The group started in the 1970s when the hemophilia patient community went to Congress and said “we need to have a comprehensive care model for adequately...

Ehlers-Danlos Syndrome: “It Hit Like a Tornado”

  Patricia Weltin of Beyond the Diagnosis talks about Elhers-Danlos syndrome, a rare disease that afflicts two of her daughters. Ehlers-Danlos syndrome is a group of connective tissue disorders. There are various forms of Ehlers-Danlos. According to the NIH,...

Patient Advocacy Certificate Training

  David Pearce, PhD, of the Coordination of Rare Diseases at Sanford (CoRDS) talks about their patient advocacy conference held in Sioux Falls, SD. The 3-day Patient Advocacy Certificate Training (PACT) is a program designed by CoRDs and Professional Patient...

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. Congenital hyperinsulinism occurs in...
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