Living with FCS
Who are weGetting Involved
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Meet our Medical Advisory Board
Check out the NEW profiles of our Medical Advisory Board.
Check out our facebook page
We are an active group online. Check out our Facebook page to see what we are up to and how we are advocating for those Living with FCS.
5th Annual Virtual 5K Race Walk
Sign up for the 4th annual Virtual 5K Race Walk to raise awareness for those living with FCS! The Race Walk takes place from September 29 to October 05, 2024! All participants will receive a Race T-Shirt. Thank you for your support for this Patient-Caregiver Event!...
HEART Act Celebration
On February 14, 2023, FCS patient Giuliana & FCS Foundation Co-President, Melissa Goetz & Congressman Tonko celebrated the HEART Act legislation passing in December 2022. We are thrilled to share news of a significant breakthrough in the fight against familial...
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As we work with those Living with FCS – we sometimes need your help. Contact us to find out how you can get involved..
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What is FCS
“Familial Chylomicronemia Syndrome (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.”
FCS signs and symptoms
Familial chylomicronemia syndrome (FCS) is genetic, which means it is always with you. The age at which patients first show symptoms and the types of symptoms they experience may vary. Some people may have noticeable warning signs of FCS when they are young. Others may not feel anything until adulthood.
About This Website
LivingwithFCS.org is a site for all Familial Chylomicronemia Syndrome (FCS) patients, caregivers and family members that offers information, resources and support. The goals of this site are to build connections and offer resources and support to help FCS patients become informed advocates for themselves and their disease. This website will share new developments and information to help patients and families on their journey and is focused on helping to build the FCS community through providing a forum for patients to meet, exchange questions, share challenges, and offer support to one another. Global Genes is able to produce this site with an unrestricted educational grant from Akcea Therapeutics.