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Advocacy

Add your voice

We teamed up with HEART UK to run a patient advocacy workshop to look at how decisions are taken that affect the care of patients and the ways that those affected by the condition can help to ensure that the best decisions are made.  We looked at the different ways that we can get involved, and ways to raise awareness of the impact that FCS has and the burden it puts on the lives of patients and all those around them.

Films from the day

Our first, short film captures the views of the participants of the workshop whose lives are affected by FCS .

Simon Williams from HEART UK talks about the difference that the patient voice can make and the process that new drugs have to go through in order to be made available to patients.

In this film Simon talks about the benefits of using social media

 

Berkeley Greenwood from Decideum talks about the regulatory landscape that new medicines have to navigate in order to be made available to patients.

Phil Wakefield from Apothecom talks about the importance of the patient voice in raising awareness and increasing understand of the impact of FCS.