There is a long way to go to ensure that FCS is known well enough for diagnosis to happen early in a patients life.

Once diagnosed, there is a long way to go to ensure that all patients have access to a treatment that works for them and helps them to manage their symptoms, or even better, is a cure!

There is a long way to go to ensure that understanding of the condition and support for patients living with FCS, and for those around them, is given as a matter of course.

And there is a long way to go to ensure that the life opportunities of patients with FCS are not diminished by the effect of living with the condition - whether this be by managing the symptoms, the medication, or the limitations that the severely restricted diet entails.

Raising awareness of the disease and its impact, is one of the first steps to encouraging interest into the plight of patients, and for change to happen.

What can you do to help highlight FCS?