RAO Network

Fibrolamellar Cancer Foundation

A large group of people pose on a dock at a lake
Every year, The Fibrolamellar Cancer Foundation (FCF) brings together patients from around the world to the Vermont mountains to create a more intimate dialogue among the community and a support system they would not have otherwise. Photo courtesy of The Fibrolamellar Cancer Foundation.

Be your best advocate

After receiving his life-threatening fibrolamellar carcinoma (FLC; liver cancer) diagnosis, founder Tucker Davis launched the Fibrolamellar Cancer Foundation (FCF). Later, Tucker’s mother Marna became chairperson after his 18-month fight. In 2015, Marna named John Hopper, a cancer patient caregiver and healthcare industry and nonprofit leader, as the organization’s new president. The faces of fibrolamellar children and young adult “fighters” were nearly invisible to the research community until FCF was formed 10 years ago. Since then, FCF has made collaboration and data sharing key pillars to advancing progress on this urgent cancer.

FLC occurs predominantly in otherwise healthy adolescents and young adults 12 to 34 years of age. Patients generally are unaware of the tumor until it has grown large, causing pain and other symptoms. Surgery remains the only effective treatment for FLC, but only two-thirds of new patients have operable primary tumors and most have widespread metastatic disease. FLC has an exceptionally low five-year survival rate. 

The work of John and his FCF team is dedicated to developing research for therapies and standard of care to save the lives of the children and young adults fighting this cancer. The Rare As One Network will provide the FCF with the tools and resources to better identify and mobilize patients to form a robust community. 

The faces of fibrolamellar children and young adult ‘fighters’ were nearly invisible to the research community.

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