Despite how it sounds, a rare cancer diagnosis is not uncommon. In fact, each year when approximately 1.7 million people in the U.S. are diagnosed with cancer, more than 25% of those people will hear the words that they have been diagnosed with a rare cancer.
What is uncommon about rare cancers is a specific treatment.
September 30th is designated as National Rare Cancer Awareness Day (#RareCancerDay). Established by the National Organization for Rare Disorders (NORD®) and its Rare Cancer Coalition, it’s a day that unifies individuals living with rare cancers to educate the public about the need for research for specific treatments that can save lives.
#RareCancerDay brings attention to the fact that without research funding, 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.
One of these types of rare cancers is Fibrolamellar Carcinoma (FLC), an aggressive, liver cancer that strikes teens and young adults who are typically not diagnosed until the cancer is in an advanced stage. Fibrolamellar is a prime example of an overlooked, urgent rare cancer with no known effective systemic therapies.
Courtney Homer, 27, from Glendale, Arizona, was diagnosed with Fibrolamellar in 2014. She taped this video segment to tell her story of the treatments she has tried and her journey since her diagnosis in 2014 when she was only 21. Homer is an example of the difficulties in establishing treatment protocols for rare cancers, especially for this aggressive adolescent/young adult (AYA) liver cancer which primarily strikes 12-34-year olds who have so much life to look forward to.
While Sept 30 is #RareCancerDay, the next day, October 1st begins Liver Cancer Awareness Month. John Hopper, Rare Cancer Coalition Co-Chairman and President of the Fibrolamellar Cancer Foundation (FCF), said, “The FCF is hopeful that the increased attention at this time of year will help further interest from researchers- and funders- across the globe to collaborate and bring forth new innovative and effective curative treatments.”
Earlier this year, FCF got a boost for its research efforts by being awarded the Chan Zuckerberg Initiative (CZI) Rare As One Network grant. The award helps rare disease foundations fund research, build active patient communities, and partner with scientists and clinicians to accelerate discoveries.
“We are hopeful for breakthroughs sooner than later to help our young brave fighters win their battle against fibrolamellar – as we wish for all rare cancer fighters,” Hopper said.
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
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 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
