Updated Version! New Look! | #chronicillnessVOICE | SPECIAL EDITION | eyeforpharma Patient Summit Europe ~ My experiences, incl. Im-patient | Carole Scrafton

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Again, thank you to Paul Simms and his team for the support & recognition himself and eyeforpharma have brought to FibroFlutters this year.


  • They gave us the opportunity to air the voices of those without the means to do it.
  • Helped us to overcome a few fears regarding social engaging in large spaces and flying, and general mental health hurdles.
  • Helped FibroFlutters to find it’s real sense of purpose and direction and very soon new a few fabulous things will be happening but, not spilling the beans just yet!.
  • Given the opportunity to build up our self-confidence and self-worth so that we can now advocate  externally at events.
  • Provided us with fantastic opportunities to make a difference alongside many other patient and carer advocates from across Europe and Internationally.
  • As a network we have grown , in fact doubled in size in less than 12 months which has also been because of the work we have done at the eyeforpharma conferences.
  • Being recognised as a patient expert is a life-changing thing and so was realising the extent of the work that I have done to get FibroFlutters where it is at today.
  • I have Paul to personally thank for being a guide / mentor, he has kept my head straight when needed and was / is the key person behind getting me to start valuing myself more.  Works in progress!

Check out this article that Paul published after Barcelona in March about FibroFlutters and my feedback regarding the event.

We’re all-a-flutter | Paul Simms Chairman of eyeforpharma | 21 March 2018

Check the eyeforpharma Patient Policy which is how myself and Sonia get to go and participate in their events.

eyeforpharma: Patient Policy By Paul Simms, Chairman, eyeforpharma. Updated August 2017

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