Tania Simoncelli, Vice President, Science and Society, Chan Zuckerberg Initiative speaks about the FOXG1 Research Foundation extrraodinary work towards treatments and how it inspired the "Rare As One" program.
“In 2019 the Chan Zuckerberg Initiative launched the Rare as One network, it’s a program where we are providing direct funding and a whole incubator style program to help patient-led rare disease organizations build their scientific and organizational capacities to accelerate research in their disease areas. And we did this out of recognition and really having learned from Global Genes and many people like David Fagenbaum and Nasha Fitter about the extraordinary work they were doing and recognizing that there was no funding for patient communities, and why weren’t these groups being funded when they are so critical to accelerating research.
With real modest support these groups can completely transform the research landscape in their disease areas. Many shortening the distance from basic biological discovery all the way to potential treatments in their diseases that typical takes an average of 30 years to less than a decade.
I just want to echo Nasha’s comments here that we have to recognize, all of us, all of the stakeholders in this room, that strong patent communities are not nice-to-haves they’re must-haves. And if we recognize that we need to see a proliferation of programs including in the federal government, that are directly funding the work of patient communities. They are absolutely essential stakeholders and they are driving research. And they need to be compensated for the work that they’re doing.”
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