The Chan Zuckerberg Initiative (CZI) announced that the Fibrolamellar Cancer Foundation (FCF) is among a select group of patient-led rare disease organizations, including rare cancer foundations, to receive the first CZI Rare As One Network grant.
Founded by Dr. Priscilla Chan and Mark Zuckerberg in 2015, CZI is committing $13.5 million to the Rare As One Project to support and lift up the work patient communities are doing to accelerate research and drive progress in the fight against rare diseases, like fibrolamellar carcinoma.
“No one is more committed to finding cures for rare diseases than the patients, and families of those affected by these disorders,” said Priscilla Chan, Co-Founder & Co-CEO of CZI. “We are proud to support patient-led organizations as they pursue diagnoses, information, and treatment options in partnership with researchers and clinicians.”
CZI is providing funding, training, community mentorship, and capacity-building services to assist FCF as it pursues diagnoses, information, and treatment options in partnership with researchers and clinicians.
“Our Foundation has grown tremendously over the past 10 years since it was founded by our son Tucker, before he lost his battle with this cancer,” said Marna Davis, Co-Chairman of FCF. “We’re confident that the CZI partnership will spread awareness and help FCF continue to pursue its mission of finding a cure for this disease.”
FCF President John Hopper noted, “Recognition and partnership with CZI is an enormous game changer for the children and young adults fighting rare cancers, such as fibrolamellar, which are too often overlooked. CZI’s support will bring much needed global awareness to FLC, and significantly increase the power our patients will have to influence research across academia, industry and government. Our hope is this will accelerate discoveries of curative therapies, which currently do not exist, to give our young fighters a better chance to survive this cancer.”
For more information on the Rare as One Project and the Chan Zuckerberg Initiative click here.
STAT, which is a biopharma, health policy and life science newsletter also reported on the Rare as One grants.