Keck Graduate Institute "Rare Disease Day: Advances in Rare Disease Therapy

Keck Graduate Institute of Applied Life Sciences (KGI) Hosted Their 7th Annual Rare Disease Day

On February 26, KGI hosted “Rare Disease Day: Advances in Rare Disease Therapy,” a daylong event dedicated to exploring and discussing the many facets that surround rare disease patients and their therapy.

“Rare Disease Day raises awareness about the plight of 30 million people in the USA who have a rare disease,” said Professor Ian Phillips, director of the KGI Center for Rare Disease Therapies. The theme this year is “New Innovations in Rare Disease Therapies.”

The event’s keynote speaker was Dr. Alvin Shih, executive vice president of research and development at Retrophin, Inc., a company dedicated to developing orphan drugs. Other speakers included Dr. Tim Coté, principal of Coté Orphan Consulting, LLC; Tamar Grossman, PhD, associate director at Ionis Pharmaceuticals; Ethan Perlstein, PhD, CEO of Perlstein Lab, PBC; Will Raasch, a KGI alumnus who founded WeHealth; and Nicole Boice, founder and CEO of Global Genes, a global patient advocate organization.

KGI’s tradition is to show a new movie each year related to patients with rare diseases; this year screened, Banner on the Moon, which follows the accomplishments of Cindy Abbot, a patient with a rare disease who has climbed Mount Everest and raced in the 1,000 mile Iditarod Trail Sled Dog Race in Alaska.

The Rare Disease day is supported by the KGI student Rare Disease Club and The Center for Rare Disease Therapies.

Keck rare disease panel

Panelists:Left to Right: Ethan Perlstein, founder, Perlstein Lab PBC, Will Raasch, founder, WeHealth, Nicole Boice, founder and CEO, Global Genes, Alvin Shih, executive vice president, R&D, Retrophin, Inc., Tamar Grossman, associate director, lonis Pharmaceuticals, Timothy Coté, principal, Coté Orphan Consulting, LLC (session chair)

KGI’s mission is to enrich society with breakthrough approaches to education and translational research in the life sciences. The KGI School of Applied Life Sciences is dedicated to education and research aimed at translating into practice the power and potential of the life sciences for the benefit of society. The School of Pharmacy is dedicated to the education of innovative pharmacists who will serve the needs of individual patients, the healthcare system, and the bioscience industry. Our program emphasizes interprofessional collaboration, systematic problem solving, the safe, efficient, and ethical use of technology and biotechnology, and personalized patient care.

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