In an exclusive “Good Morning America” interview this week, Dr. Priscilla Chan announced the launch of Rare As One, a new program from the Chan Zuckerberg Initiative where she is co-CEO with her husband and Facebook founder, Mark Zuckerberg.
This is great news! More attention, focus, and resources will be going to combat rare diseases.
Rare as One aims to help build rare disease patient registries and research networks, and also provide the resources and tools necessary to strengthen and connect these communities so they can be a collective force that accelerates the search for treatments and cures.
“When I was a young physician, I would open up a patient’s chart and, like, read something about it and … and I at first, was embarrassed,” Dr. Chan recalled. “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?'”
The program will invest $4.5 million to patient-led endeavors to fast-track research to find cure for life-threatening rare diseases.
‘Patient Voice’
Rare As One is “about bringing in that patient voice,” according to Dr. Chan.
“They have the insights … I can still remember exact patient rooms where the research didn’t materialize in time or we didn’t find the right treatment, and exact families,” she said. “I think those experience is what makes me realize that we have to do more.”
It is clear to Dr. Chan — as it is clear to us — that the voice of the patient community is such an important factor, and Rare As One seems to be centered on patient-led efforts and getting resources into patient communities.
“In the Rare As One work we’re really thinking through when we’re supporting groups building these patient registries, what are our principles around ethics, privacy, security that we wanna see live in these groups when we fund them?” she said. “And if they don’t live yet, how can we best support them?”
We look forward to the work Rare As One is poised to do!
