Living with FCS

Familial Chylomicronemia Syndrome (FCS)

Our mission is to establish a global support network to promote advocacy and education for patients and caregivers living with Familial Chylomicronemia Syndrome (FCS). This site is a place for all FCS patients, caregivers and family members to gather information, resources and support.

Community Connections:
Together to Talk, Listen, and Share

Guided by Al Freedman, PhD

Wednes, May 13, 2026 | 6:00pm – 7:30pm ET

Community Connections is a welcoming, bi-monthly virtual gathering for individuals living with FCS and their caregivers. Guided by rare disease psychologist Dr. Al Freedman, these 90-minute sessions provide a supportive space to connect with others who understand the experience of living with FCS. Dr Al brings both personal and professional experience to our community having cared for a son affected by a rare disease for over 25 years.

Each session is designed as a shared conversation, offering an opportunity to talk openly, listen, and learn from one another in a supportive and confidential environment. Whether you choose to share or simply listen, you are welcome to join a community built on understanding, connection, and knowledge, connection, and support,

Al Freedman, PhD

Psychologist, Consultant,
Keynote Speaker & Father
Freedman Counseling Associates

REGISTER NOW Download a Flyer to Share

Thank you to Ionis Pharmaceuticals and Arrowhead Pharmaceuticals
on supporting this program through unrestricted grants.

Join us for the

FRED Saremi Memorial FCS Foundation Virtual 5K

Thursday, June 11, 2026

The virtual 5K aims to bring awareness to those living with FCS

Register Here

RACE FEE: $25/Adult | $15/Child | $75/Family Bundle

Registered Participants will receive a Race T-Shirt

Download a Flyer to Share

About FCS

Familial Chylomicronemia Syndrome (FCS) is a rare genetic disease which can have devastating effects on patients

ABOUT FCS

Donate

Your tax-deductible gift delivers support to FCS patients with limited access to care, knowledge and treatment

donate

Recipes

FCS-friendly recipes and dietary recommendations to assist in living with FCS


Recipes

Contact Us

Contact us by email or social media to become a part of our patient / professional partnership

contact us
About This Website

LivingwithFCS.org is a site for Familial Chylomicronemia Syndrome (FCS) patients, caregivers and family members. 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. The FCS Foundation is able to produce this site with unrestricted educational grants from Arrowhead Pharmaceuticals and Ionis Pharmaceuticals.