PharmaTalkRadio29 Huhti 2020

Advocating for People Managing Hermansky-Pudlak Syndrome

In the third episode of our series highlighting rare diseases, Conference Forum reporter Danny McCarthy sits down with Fernando Albertorio, PhD, to discuss Hermansky-Pudlak Syndrome. Dr Albertorio is co-founder of Sunu, Inc, which creates wearable, IoT and mobile technology that empowers independence for people who a blind and visually impaired. Dr Albertorio is also an advocate for increasing awareness and treatments for managing Hermansky-Pudlak Syndrome (HPS). HPS is an extremely rare autosomal recessive disorder, characterized by albinism, visual impairment, and a platelet dysfunction that results in prolonged bleeding. There are currently 10 known types of HPS. In the episode, Dr Albertorio mentions several websites for more information: HPSNetwork.org, GlobalGenes.org and Sunu.com.

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