Chan-Zuckerberg Initiative launches program to speed up fight against rare diseases

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Thursday, July 25, 2019
Dr. Priscilla Chan launches new program to fight rare diseases
Dr. Priscilla Chan said she felt embarrassed when asking a young patient suffering from a rare disease how they took care of themselves. She was even more frustrated when the medical literature didn't provide many answers either.

SAN FRANCISCO -- As a young pediatrician in San Francisco, Priscilla Chan said she would feel embarrassed when she would walk into a young patient's room and not know anything about the rare disease that person was suffering from.

"I would walk into a room and say, 'I don't know anything about your disease. Can you tell me, how do you take care of yourself?'" Chan remembers asking.

She was less satisfied after going through medical literature and discovering it had fewer answers to treat rare diseases. That was the genesis of a new idea to speed up the fight against rare diseases by letting patient communities take a prominent role in them.

In an exclusive "Good Morning America" interview with Robin Roberts, Chan announced the launch of Rare as One, a new program from Redwood City, Calif.-based Chan Zuckerberg Initiative where she is co-CEO with her husband and Facebook founder, Mark Zuckerberg.

The program will invest $4.5 million to patient-led endeavors to fast-track research to find cure for life-threatening rare diseases.

Watch more of Priscilla Chan's interview with Robin Roberts here.