The Familial Chylomicronemia Syndrome Foundation Recognizes First-Ever FCS Awareness Day
SAN DIEGO, Nov. 2, 2018
SAN DIEGO, Nov. 2, 2018 /PRNewswire/ -- The FCS Foundation, the only patient group in the United States focused on supporting patients and families living with familial chylomicronemia syndrome (FCS), today recognizes the first-ever FCS Awareness Day, a new global initiative to build awareness of the significant impact this rare genetic lipid disorder has on patients, caregivers and families. FCS Awareness Day will now be recognized annually on the first Friday in November.
"We are very pleased to join with people around the world to recognize the very first FCS Awareness Day and to build new levels of awareness and support in the years ahead," said Lindsey Sutton, co-president of The FCS Foundation. "I know first-hand the challenges of living with FCS including the risk of severe attacks of pancreatitis and the feelings of isolation and helplessness. FCS Awareness Day is a great opportunity to help more clinicians and families learn about the symptoms of FCS and the important progress that is being made in research and patient support."
FCS is an ultra-rare genetic disorder caused by a build-up of triglycerides (fats) in the bloodstream that puts patients at risk of unpredictable and potentially fatal acute pancreatitis, chronic complications due to permanent organ damage, and other symptoms that can have a severe impact on the ability to work and participate in activities of daily living. There is currently no approved treatment for FCS. Some patients take steps to maintain an extremely low-fat diet (less than 10-20 grams a day – there are about five grams of fat in a pat of butter), but are still at risk of symptoms including attacks of pancreatitis.
"As the leading patient advocacy group in FCS, we have recognized the essential need to increase disease awareness, connect FCS patients with others in the community, and support advances in research," added Melissa Goetz, co-president of The FCS Foundation. "We hope that FCS Awareness Day will inspire many more people as well as leaders from industry and government to get involved."
The FCS Foundation invites patients, caregivers, clinicians, friends and family to support FCS Awareness Day via social media using hashtags #FCSAWARENESS2018, #ActionFCS and #LivingwithFCS. For more information about FCS, please visit www.livingwithfcs.org or www.facebook.com/fightfcs.
About the Familial Chylomicronemia Syndrome Foundation
Founded in 2016, The FCS Foundation's mission is to establish a global support network to promote advocacy and education for patients and caregivers living with FCS. The FCS Foundation is the only foundation dedicated to patients suffering from familial chylomicronemia syndrome. For more information, visit: www.livingwithfcs.org.
Melissa Goetz, Co-President, FCS Foundation
Lindsey Sutton, Co-President, FCS Foundation
SOURCE The FCS Foundation