Fibrolamellar Becomes Lead Example for Rare Cancer Awareness Day #RareCancerDay

The Fibrolamellar Cancer Foundation is leading the way to spread the word that September 30^th is designated as National Rare Cancer Awareness Day. (#RareCancerDay)

Spearheaded by The National Organization for Rare Disorders’ (NORD®) Rare Cancer Coalition, #RareCancerDay is observed to unify individuals living with rare cancers and the need for greater research funding.

John Hopper, Rare Cancer Coalition Co-Chairman and President of the Fibrolamellar Cancer Foundation went further, “The coalition raises the fact that separately, we are rare, but when we come together, we raise our collective voices.”

Each year, approximately 1.7 million people are diagnosed with cancer. Of those, more than 25% (or 550,000+) are considered rare cancers. According to the American Cancer Society, of the known distinct cancers, 95%, are rare forms. And every pediatric cancer is a rare cancer. #RareCancerDay brings attention to the fact that rare cancers are grossly under-researched. Without more research directed to specific rare cancers, the only options for patients is to endure blanket therapy regimes that are designed for other types of cancers and, as a result, patients typically do not have high survival rates.

Fibrolamellar is a prime example of an overlooked, urgent rare cancer with no known effective systemic therapies. Fibrolamellar Carcinoma (FLC) is an aggressive, liver cancer that strikes teens and young adults and typically not diagnosed until the cancer is in an advanced stage.

Hopper said, “The Fibrolamellar Cancer Foundation (FCF) is proud to take a leading role in #RareCancerDay. By focusing at least one day towards educating and building awareness around the world on the immense challenges almost every rare cancer faces, FCF, together with NORD, hope to shift the paradigm of research focus towards helping patients who are fighting these horrific cancers. Particularly with pediatric and adolescent/young adult (AYA) patients, researchers now have the ability to determine the drivers of cancers like fibrolamellar, through molecular profiling. This information should help lead to breakthrough therapies that may also be applicable to more common cancers.  Importantly, support across government, industry and academia are needed to accelerate near term discoveries.”

Crusading #RareCancerDay

FCF received endorsement by U.S. Senator Richard Blumenthal who is championing #RareCancerDay. “On #RareCancerDay, I’m proud to stand with the Fibrolamellar Cancer Foundation and the National Organization for Rare Disorders to raise awareness of rare – and often deadly – cancers and to keep up the fight for cures. With robust federal investment, we can and will find cures for rare cancers like Fibrolamellar, an aggressive cancer impacting our youth with no effective cure. Increased, ongoing federal funding is essential to spur innovation and discovery of treatments and cures to help save lives,” Blumenthal said.

#RareCancerDay Support:

“The Chan Zuckerberg Initiative is proud to support organizations like the Fibrolamellar Cancer Foundation that are leading the fight against rare cancers,” said Heidi Bjornson-Pennell, Patient Engagement Strategist at the Chan Zuckerberg Initiative (CZI). “Rare cancers are an important area of research, and through CZI’s Rare As One Network, patient-led groups are actively partnering with scientists and clinicians and driving the search for treatments and cures.”

NORD explains rare cancer diagnosis: 

“I’ve never heard of that!” is often the response people living with rare cancers hear when sharing news of their diagnosis. Those living with rare cancers also lack available information and effective treatment options, in addition to the isolation, fear, frustration and other overwhelming feelings that can accompany a more common cancer diagnosis. The goal of #RareCancerDay is to raise critical awareness of rare cancers and the need for greater research and patient support. Unifying all rare cancer communities and reminding people living with rare cancers that they are not alone—but are in fact part of a rare but mighty “herd” (borrowing from the analogy of a herd of zebras, the official symbol of rare diseases in the United States)—are key elements of this exciting new campaign.

The NORD Rare Cancer Coalition, composed of 27 rare cancer-specific member organizations, asks individuals and groups to visit  rarediseases.org/get-involved/rare-cancer-coalition/rare-cancer-day/ for downloadable assets, a social media toolkit, event details and more information.

About the National Organization for Rare Disorders (NORD®): The National Organization for Rare Disorders (NORD) is the leading independent advocacy organization representing all patients and families affected by rare diseases. NORD is committed to the identification, treatment and cure of more than 7,000 rare diseases, of which approximately 90% are still without an FDA-approved treatment or therapy. Rare diseases affect over 25 million Americans. More than half of those affected are children. Information about NORD can be found at www.rarediseases.org

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. In 2020, FCF became an inaugural grant recipient  of the newly formed CZI Rare As One Network.  As part of the CZI Rare As One Network, patient-led organizations are developing and launching collaborative research networks in partnership with clinicians and scientists. The program provides funding, tools, and capacity-building support and training. 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