A group of concerned patients and care providers for a rare disease have announced the formation of the first-ever organization dedicated to providing education and support for people living with familial chylomicronemia syndrome (FCS), a rare and potentially life-threatening genetic lipid disorder.
The FCS Foundation will provide a range of educational materials and support services for individuals and families affected by FCS as well as for clinicians. The organization will also work to support research targeting new treatments and a cure for FCS.
“FCS is a rare genetic disease which can have devastating effects on its victims,” says Dr. Seth Baum, a preventative cardiologist who specialized in FCS. “The creation of the FCS Foundation will provide patients, caregivers, and healthcare providers the opportunity to identify and support best treatments, disseminate meaningful lifestyle management tools, and develop more accurate diagnostic systems for individuals going forward.”
The FCS Foundation was established by Lindsey Sutton and Melissa Goetz, two disease advocates directly impacted by FCS. In addition, The FCS Foundation board of directors includes additional leaders from the FCS patient community.
“I have spoken to so many people affected by FCS about the lack of information and resources to support patients and to help clinicians deliver the best quality care,” Sutton says. “Our mission with The FCS Foundation is to make sure that all people have access to the information and support they need to get a proper diagnosis and manage FCS more effectively.”
FCS is a genetic condition that causes a buildup of fats in the blood that can increase the risk of severe abdominal pain and potentially fatal attacks of pancreatitis. It is also sometimes known as lipoprotein lipase deficiency (LPLD), Fredrickson Type 1 hyperlipoproteinemia and familial hypertriglyceridemia. There are currently no FDA approved therapies for the treatment of FCS. Most patients take steps to reduce their risk of pancreatitis through lifestyle modifications including strictly limiting fat intake.
“Our mission with The FCS Foundation is to make sure that all people have access to the information and support they need to get a proper diagnosis and manage FCS more effectively.”
“I was overwhelmed when my daughter was diagnosed with FCS,” Goetz says. “I found that many physicians were not familiar with the disease and there were very limited resources available. Through The FCS Foundation we want to expand the information and services available for FCS families to help them take the right steps to protect their health and to know that there is support available.”
In addition to developing materials including a first-ever online resource for patients at www.livingwithfcs.org and programs to support patient and caregiver education, The FCS Foundation will also work to raise money to expand the focus on research and development of new treatments in the years ahead.
For more information, please visit The FCS Foundation website at www.livingwithfcs.org and its Facebook page at Facebook.com/livingwithfcs
ABOUT THE FCS FOUNDATION
The FCS Foundation is a nonprofit organization dedicated to providing information and support to people affected by FCS and to identifying new resources to support research to find new treatments and potentially a cure. The Foundation is registered inCalifornia and provides information and support services through an online portal at www.livingwithfcs.org. It will also develop a range of educational and support programs and services for patients. Additionally, The FCS Foundation will take an active role in building broader awareness of FCS among clinicians and other care providers who support FCS families.