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Get Involved

Ideas Welcome

As people affected by a rare condition it’s important to get our voice heard and ensure that the wider world and those who make decisions affecting our care, recognise the impact that FCS places on people who have it and on those around them.  In January 2018 we ran a workshop about patient advocacy and ways in which you can get involved.  We made a series of films which you can view here.

Help us gather evidence for the NICE (National Institute for Health and Care Excellence) NICE and volanesorsen

Help to raise awareness with the FCS 10g Fat Challenge

Please share your recipes,

Please share your story 

Would you consider being a member of an Advisory Board for LPLD Alliance

Would you like to do some fundraising? 

We are open to suggestions!

Please email us here