Every year, on the first Friday of November, our global community comes together to mark FCS Awareness Day, a day of solidarity, awareness raising and shared stories. It is a moment to shine a light on Familial Chylomicronaemia Syndrome (FCS), an ultra-rare familial lipid /metabolic disorder that profoundly shapes the lives of those who live with it. For many, FCS is a journey lived quietly, under the radar, in the spaces between everyday meals and everyday conversations. But today, we choose to bring it into the light.
FCS is a genetic disorder in which the enzyme responsible for clearing fat-rich particles (chylomicrons) from the bloodstream — lipoprotein lipase (LPL) — is missing or does not work properly. As a result, triglyceride levels can soar, chylomicrons build up, and the consequences can be severe: recurrent acute pancreatitis, visible physical signs such as milky blood, fatty skin deposits, or lipemia in the retina, and a daily life marked by strict dietary vigilance, fatigue, digestive discomfort, and social isolation. Because FCS affects perhaps only 1 to 10 people per million, and because its symptoms overlap with more common disorders, it often goes unrecognised or misdiagnosed.
(For a full description, visit our FCS Awareness Day page at FHEF.)
Why We Celebrate FCS Awareness Day
Why dedicate a day to FCS? Because someone living with this rare condition often feels invisible. They eat with care when others eat freely; they monitor their body while others assume they’re “fine.” The world rarely sees the constant vigilance, the fear of pancreatitis, or the exhaustion of managing a strict low-fat diet, usually less than twenty to ten grams of fat a day. Any fat that is.
FCS Awareness Day exists to change that. It’s about recognition, connection, research, and resilience. It’s about helping clinicians, dietitians, and families recognise the signs sooner. It’s about connecting people who might otherwise never meet someone who understands. It’s about encouraging research and dialogue so that one day better treatments, or even a cure, will exist. And it’s about honouring the extraordinary courage of those who live with FCS every single day.
Building a Global Movement
Over the years, our international community has been working to transform awareness into advocacy. Through creative social-media campaigns, educational webinars, sessions at scientific congresses, or research projects, and publications, we have been trying to help the world understand what FCS means in daily life.
In collaboration with Action FCS we have been promoting the “FCS 10 Grams Fat Challenge”, encouraging people everywhere to try living within a ten-gram daily fat limit to grasp the reality of the condition. We have built bridges across continents — joining hands with Action FCS in the UK, The FCS Foundation and the National Pancreas Foundation in the USA, and newly discovered patient groups in Spain and Canada. Together, we hope to form a connected global voice for recognition, research, and respect.
FCS 10 grams Fat Challenge over the years
Voices of Advocacy: Our FCS Ambassadors
This year, our FCS Ambassadors are once again carrying that message worldwide.
Earlier in September, Teevi from Estonia shared her moving story of caring for a child with FCS at the European Parliament in Brussels, during our event ““Cardiovascular Prevention as the Cornerstone of a Competitive Europe – Scaling Up Lipid Screening to Secure Next Generations”. Her testimony brought the reality of life with FCS directly to European decision-makers, reminding them that behind every policy or research milestone stands a family navigating the daily challenges of a rare disease. Teevi also supported the European Medicine Agency (EMA) in reviewing a patient information leaflet for the newly approved therapy for FCS as an FHEF caregiver expert.
Read more about the Parliament event →
In the Netherlands, Margot represented our community at the World Orphan Drug Congress (WODC) in Amsterdam, raising awareness from the FHEF booth and engaging with policy leaders, researchers, and fellow advocates. And at the same event our Team spoke in a dedicated session about precision medicine in the context of FCS and HoFH. This comes at the time when new therapies are being developed, with new clinical trials and therapies slowly being approved in Europe and the USA. For more information check the
Discover the WODC post event report here
In Scotland, Helga will take the stage at the 2025 Global Forum: Creating Health Through Understanding and Personalising Value, sharing her lived experience of FCS and helping to reimagine how rare diseases are valued in healthcare discussions.
Discover the event program here.
And in Washington DC (USA), Scott will speak for the first time at the Cardiovascular Clinical Trials (CVCT) Forum, connecting with U.S. regulators, leading trialists and industry to ensure that the FCS community is heard within the heart of global health policy. Then, inspired by the Ambassador Programme, he plans to visit his national policymakers based in the capital city. Bravo Scott!
Check out the CVCT Forum programme here.
And in exactly one week, the Ambassador will get a chance to meet in person again at the FH Europe Foundation Annual Network Meeting 2025 in Zagreb.
These actions and stories of lived experience which you can find on our website are part of a bigger tapestry, a movement that blends lived experience with leadership, transforming personal challenges into collective progress.
From Awareness to Action
Awareness is the first step, but it must lead to action. We invite everyone — individuals, families, healthcare professionals, life sciences representatives and health policy makers — to take part in this journey.
Visit our dedicated page at FHEF – FCS Awareness Day to explore and share resources: social-media graphics, “I Support FCS” frames, quote templates, virtual backgrounds, and personal stories. Share them widely using #FCSAwarenessDay and #FCS10gFatChallenge, start a conversation, ask questions, and help someone new discover what FCS is and why it matters.
Together, We Make FCS Visible
Today, and every first Friday of November, we don’t just raise awareness — we raise hope. From quiet invisibility to collective recognition, from isolation to connection, from challenge to change.
Thank you for standing with the global FCS community.
Together, we bring FCS from the shadows into the light.