Greenwich, CT – (February 29, 2020) – Leap Day. The rarest day on the calendar and the most appropriate day to be declared as National Rare Disease Awareness Day.
This is the day, Mark A. Carles, 25, of Staten Island, NY, steps forward to spread the word of awareness to everyone. Carles was diagnosed with Fibrolamellar, an aggressive liver cancer that mostly strikes teens and young adults. After years of trying to deal with a bad case of “acid reflux,” Carles, an otherwise healthy triathlete and graduate student, felt a pain in his side and was diagnosed with Fibrolamellar on October 2018. After liver surgery and multiple rounds of unsuccessful chemotherapy, Carles clings to the hope of a clinical trial to save his life.
“The lack of awareness and research funding equates to few, if any, curative therapies for rare cancers like Fibrolamellar, and consequently low survival rates,” according to John Hopper, President of the Greenwich, CT -based Fibrolamellar Cancer Foundation (FCF).
Carles explained, “Rare Cancer fighters like me depend on foundations like FCF to connect us with other patients to build a support community and allow us to help in any way possible to drive research forward. I am hopeful that increasing support from government, academia, pharma and philanthropic foundations will accelerate the path to a cure.”
Right now, there are 30 million Americans with a rare disease. That is 1 in every 10 people. Fibrolamellar, like many rare diseases, may be something you’ve never heard of, but when rare diseases, especially rare cancers, combine as a category, the numbers are staggering. Rare Cancers represent nearly 25% of rare diseases, and all pediatric cancers are considered rare. Less than 5% of rare diseases have FDA-approved treatments. However, rare disease research often leads to breakthrough discoveries, cures and broad-based common healthcare treatments.
This year, the rare diseases have teamed up to be the mouse that roared. On behalf of the over 7000 rare diseases, Fibrolamellar joins the voice of the 30 million Americans who are fighting rare diseases on this National Rare Disease Day.
Hopper has become a visible spokesperson among the national leaders for their respective rare disease categories in the state of Connecticut and across the nation. The dire need for awareness and research funding has been recognized by the Chan Zuckerberg Initiative, which recently named the FCF as the inaugural cancer in its Rare As One Network.
Earlier this week, Fibrolamellar was featured as a rare disease example when Greenwich First Selectman Fred Camillo held a press conference at Town Hall to declare the first official Rare Disease Awareness Day in Greenwich.
“We are hoping that his message spreads nationwide, and worldwide. A fraction of the funding that popular cancers and other diseases receive is enough to help or even cure some rare diseases,” Hopper said. “We’re talking about 10% of the population that could be helped.”
Rare Disease Facts are:
- A rare disease in the United State is one affecting fewer than 200,000.
- There are approximately 7,000 rare diseases, according to the National Institutes of Health (NIH).
- More than 60% of those suffering from rare disease are children and the diseases tend to be serious and lifelong.
- 30 million Americans or about 1 in 10 have a rare disease.
- Less than 10% of rare disease have a single FDA-approved drug
- Patients often have limited availability of information on their condition
- Common challenges facing rare disease patients include, but are not limited to:
- Obtaining an accurate diagnosis
- Little to no existing patient communities
- Limited treatment options
- Gaining access to the treatment options that do exist
- Difficulty finding physicians with experience in treating a particular rare disease.
- Financial struggles related to the cost of treatments.
Spread the word about rare disease awareness and look into how a little bit of help makes a major impact on fibrolamellar carcinoma and all of the 7000+ rare diseases.
About the Fibrolamellar Cancer Foundation:
The Fibrolamellar Cancer Foundation, Inc. was founded in 2009 by Tucker Davis and his close friends when he was diagnosed with fibrolamellar carcinoma. The purpose of the foundation is to help find a cure and treatment options for this often-fatal disease, raise awareness, and connect and support the fibrolamellar community of patients and their families. 100% of net donations go towards research. For more information, visit www.fibrofoundation.org
About Rare Disease Day:
Rare Disease Day is an annual awareness day celebrated around the world dedicated to elevating public understanding of rare diseases and calling attention to the special challenges faced by patients. The goal of Rare Disease Day, organized by the National Organization for Rare Disorders (NORD)® (Danbury CT national headquarters) is to foster collaborative efforts across all stakeholders, especially government, to increase awareness, improve care support, encourage research, and advocate resources- financial and others- to address this growing population- in hopes for a healthier community. For more information about Rare Disease Day in the U.S., go to www.RareDiseaseDay.us. For information about global activities, visit http://www.RareDiseaseDay.org.
Fibrolamellar Cancer Foundation
Fibrolamellar Cancer Foundation
20 Horseneck Lane, 2nd Floor, Greenwich, CT 06830
T: 203-862-3196; www.fibrofoundation.org