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.

Celebrate 10 years of the FCS Foundation

The FCS Foundation is 10 years old this month. Join us on a journey through 10 years of connection, advocacy, and education!

Read the history

Community Connections:
Together to Talk, Listen, and Share

Guided by Al Freedman, PhD

Thursday July 9, 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
for supporting this program through unrestricted grants.

Patients and Caregivers: You’re Invited!

The FCS Foundation Patient & Caregiver Summit

September 26 – 27, 2026
Milwaukee, WI

The purpose of the Summit is to bring together individuals and families affected by FCS to strengthen connections within our community, share experiences, and provide valuable educational resources and support.

Join us for a meaningful and empowering weekend! You will leave feeling informed, supported, and connected knowing that you are part of a community of families who truly understand the challenges of living with FCS.

Register Now

Registrations are limited to 30. All attendees 18 years of age and older must submit an individual registration. The registration deadline is  September 1, 2026.

Once you complete the online registration, you will receive an email with the Travel Form to complete along with additional information outlining costs the FCS Foundation will cover for the attendee (patient and/or caregiver), including:

  • One night accommodation (September 26, 2026)
  • Airfare
  • Meals during Summit

If you have questions regarding the 2026 Patient & Caregiver Summit, 
please email  editor@livingwithfcs.org 

About FCS

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

ABOUT FCS

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

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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

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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.