There are a growing number of organisations supporting patients with FCS and related conditions. We've listed some of them here.

National patient support organisations

HEART UK
Primarily supports patients with Familial Hypercholesterolemia but with a  remit that covers patients with other lipid disorders.
HEART UK

GUTS UK
Exists to help people affected by diseases of the gut, liver and pancreas.
GUTS UK

Metabolic Support UK (formerly Climb)
Provides advice, information and support to families and professionals affected by metabolic diseases. Also funds research.
Metabolic Support UK

Rare Disease UK (RDUK)
National alliance for people with rare diseases and all who support them. RDUK believes that everyone living with a rare disease should be able to receive high quality services, treatment and support.
Rare Disease UK

Genetic Disorders UK
Information and support for both those affected by a genetic disorder, and the charities and patient groups that support them.
Genetic Disorders UK

International

FCS Foundation
This is a patient group run by a group of people affected by FCS in the US.
FCS Foundation

Association de l’Hyperchylomicronemie
This is an organisation set up by parents in Canada.  It has a translate
Association de l'Hyperchylomicronemie

If you would like your organisation added to this page email info@actionfcs.org

 

More organisations

NORD
The National Organization for Rare Disorders (NORD) is based in the US and has information about Lipoprotein Lipase Deficiency
NORD

Genetics Home Reference
Genetics Home Reference is the US National Library of Medicine’s website for consumer information about genetic conditions and the genes or chromosomes related to those conditions and has information on Lipoprotein Lipase Deficiency
Genetics Home Reference

Orphanet
Orphanet is the reference portal for information on rare diseases and orphan drugs (intended to treat diseases so rare that sponsors are reluctant to develop them under usual marketing conditions).  The summary for FCS is currently under development
Orphanet

Also in Support