Living with FCS can be very isolating.
Connecting with others who understand the daily challenges of living with FCS can be an important part of breaking the isolation. Sharing tips and strategies about managing daily situations, and having sympathy and understanding when things go wrong, can really help to make life a little easier.
There are a number of online support groups you can access. If you would like to meet others with the condition in person we will try to connect you, please email us here.
Pictured are patients at our first patient meeting in November 2015. Most of us had never previously met anyone with FCS, and below you can see our film Add Your Voice in which people affected by the condition talk about the benefits of meeting others.
Patients at our first patient meeting in November 2015.
LPLD Discussion Community on Rare Connect
The first online platform for patients with lipoprotein lipase deficiency (LPLD). Approximately 80% of patients with FCS have LPLD.
A closed facebook group based in the US with patients from all over the world. Many patients belong to both facebook communities.