Advocacy

Leading advocates and experts share their experiences
American Porphyria Foundation’s Focus on Physician Education

American Porphyria Foundation’s Focus on Physician Education

Kristen Wheeden, Director of Development for the American Porphyria Foundation, provides an overview of her foundation and it’s focus on physician education. The American Porphyria Foundation is also dedicated to the health and well-being of patient and families impacted by Porphyria.

Dup15q Alliance and Syndrome

Dup15q Alliance and Syndrome

Vanessa Vogel-Farley, Executive Director of Dup15q Alliance discusses her organization, which provides family support and promotes awareness, research and targeted treatments for chromosome 15q11.2-13.1 duplication syndrome.

Peter Saltonstall of NORD Discusses Drug Pricing Challenges

Peter Saltonstall of NORD Discusses Drug Pricing Challenges

Peter Saltonstall, President and Chief Executive Officer of the National Organization for Rare Disorders (NORD) discusses some of the challenges facing the rare disease community, including the perception that drug pricing for orphan drugs is a driving force behind rising drug prices.

Becky Abbott of NFED on Why She Attends Rare Disease Week

Becky Abbott of NFED on Why She Attends Rare Disease Week

Becky Abbott, MPH, Manager of Treatment and Research at the National Foundation for Ectodermal Dysplasias (NFED) discuses why she attends Rare Disease Week. Ectodermal dysplasias (ED), a group of more than 180 disorders that affect the outer layer of tissue of the...

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