October 1st has been designated as Rare Cancer Day. The National Organization for Rare Disorders (NORD)®, spearheaded by its Rare Cancer Coalition, officially tagged October 1st as #RareCancerDay in order to bring attention to the fact that 25% of all cancer diagnosis are considered rare and they are grossly under-researched. As a result, rare cancers patients typically do not have specific treatments or high survival rates.
John Hopper, Co-Chairman of the Rare Cancer Coalition and President of the Fibrolamellar Cancer Foundation, one of the 24 rare cancer organizations that form the coalition, said, “Rare Cancer Day is so important to raise awareness and unify the voice of rare cancer patients. There are very few clinical trials available for rare cancers, and that needs to change in order to give patients hope and save lives.”
In 2018, 1.7 million people were diagnosed with cancer. Of those, 550,000 were 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. Without more research directed to specific rare cancers, the option for patients is to endure blanket therapy regimes that are designed for other types of cancers.
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 Rare Cancer Day. 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, hopes 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 and NORD received support by U.S. Senator Richard Blumenthal who is championing Rare Cancer Day. “With increased federal funding, we can and will find a cure for Fibrolamellar and many of these other deadly, rare cancers. I’m proud to stand with the Fibrolamellar Cancer Foundation and the National Organization for Rare Disorders as they raise awareness about Rare Cancer Day. It’s so important that rare cancers are brought to people’s attention. Many of these diseases are on the brink of discoveries that could unlock long term survival and cures, but this will only be achieved through strong federal investments in biomedical research. Fibrolamellar is a strong example: it is an aggressive, rare cancer that impacts children and young people but has no effective cure.”
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.
For more information on Rare Cancer Day and NORD’s Rare Cancer Coalition, visit https://rarediseases.org/get-involved/rare-cancer-coalition
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 the more than 7,000 rare diseases, of which approximately 90% are still without an FDA-approved treatment or therapy. Rare diseases affect 25-30 million Americans. More than half of those affected are children.
NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. For more than 35 years, NORD has led the way in voicing the needs of the rare disease community, driving supportive policies and education, advancing medical research and providing patient and family services for those who need them most. NORD is made strong together with over 275 disease-specific member organizations and their communities and collaborates with many other organizations on specific causes of importance to the rare disease patient community. Visit rarediseases.org.
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
