Chan Zuckerberg Initiative Awards Fibrolamellar Cancer Foundation First Ever Rare As One Network Grant

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 (Fibrolamellar or FLC). Fibrolamellar is an aggressive, ultra-rare liver cancer affecting children and young adults, with no curative therapies and an alarmingly low five-year survival rate.

“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.”

About the Chan Zuckerberg Initiative:

Founded by Dr. Priscilla Chan and Mark Zuckerberg in 2015, the Chan Zuckerberg Initiative (CZI) is a new kind of philanthropy that’s leveraging technology to help solve some of the world’s toughest challenges — from eradicating disease, to improving education, to reforming the criminal justice system. Across three core Initiative focus areas of Science, Education, and Justice & Opportunity, we’re pairing engineering with grant-making, impact investing, and policy and advocacy work to help build an inclusive, just and healthy future for everyone. For more information, please visit www.chanzuckerberg.com.

About Fibrolamellar Cancer Foundation

FCF, a public 501c3 nonprofit organization based in Greenwich, CT, was founded in 2009 by 27-year-old Tucker Davis, who lost his life to Fibrolamellar on Rare Disease Day in 2010, after an 18-month fight. FCF has funded nearly $10 million in research across more than 24 major institutions in the U.S. and internationally. 100% of all donations go towards research. All FCF’s overhead and administrative costs are paid by the Charles A. and Marna Davis Foundation and Stone Point Capital. For more information, visit www.fibrofoundation.org