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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.
During the latest FCS patient-caregiver virtual meeting (link) hosted by the FCS Foundation, Ionis introduced the BALANCE study to the meeting attendance. Today, Ionis officially announced the initiation of the global Phase 3 BALANCE study via a press release (link)....
CNN interviewed FCS Foundation's co-presidents Melissa and Lindsey about the #TheHeartAct2020. It was an honor to share our journey with them. The FCS community is so proud to support this legislation and work alongside so many #raredisease groups, including the...
As we work with those Living with FCS – we sometimes need your help. Contact us to find out how you can get involved..
LivingwithFCS.org is the site for all FCS patients, caregivers and family members that offers information, resources and support.
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.