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Rare Disease Day at KGI Set for February 26

On February 26, Keck Graduate Institute (KGI) will host “Rare Disease Day: Advances in Rare Disease Therapy,” which will be a day-long event dedicated to exploring and discussing the many facets that surround rare disease therapy and patients.

“Rare Disease Day is a day to raise 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. “At KGI we have been celebrating the day every year and on Friday February 26th we will have our 7th Annual Rare Disease Day. The theme this year is “New Innovations in Rare Disease Therapies”.

Scheduled to present are several exceptional speakers including scientists, doctors and patient advocates.

The event’s keynote speaker is Dr. Alvin Shih, Executive Vice President of Research and Development at Retrophin, Inc., a company dedicated to developing orphan drugs. Other speakers include Dr. Tim Coté, Principal of Coté Orphan Consulting, LLC, Tamar Grossman, PhD, Associate Director at Ionis Pharmaceuticals , Ethan Perlstein, PhD, CEO of Pearlstein Lab, PBC, Will Raasch, a KGI alumnus who founded WeHealth and Nicole Boice, Founder and CEO of Global Genes, a global patient advocate organization.

It is KGI’s tradition to show a new movie related to patients with rare diseases and this year we will screen an extraordinary film, Banner on the Moon. This film 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.