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



For Lode De Wulf to congratulate and praise me is something that I will always have to remind me that I must have said the right things!

Thank you, Lode for your kind words of encouragement and positive comments with reference to Barcelona 2018 and how we brought our messages / ideas to London successfully 😊 

For my messages to pharma to be quoted alongside the words of Lode de Wulf, and to be backed up by fellow advocacy peer Trishna Bharadia – eyeforpharma Patient Champion Award Winner 2018, by Emma D’arcy Sutcliffe was also ‘very’ amazing!

Link to the blog post where Emma quotes my messages can be found via this link >>>

Thankyou Emma for quoting me and for your support 

 I was quoted, referencing my thoughts about the ‘Im-Patient Conference by Paul Simms, Chairman of eyeforpharma, in his article on Linked In that you can read via this link >>>

An impatient truth  published 8 November 2018

Read the wonderful recommendation, written by eyeforpharma Chairman Paul Simms, for me on our FibroFlutters Linked In Page >>>

Gratitude at a high level for the recommendation Paul, it really is something special!  Thank you for your continued support.

Last words…

The wholetime that we were there, in London, the atmosphere was brilliant even during the daunting times when facing new challenges for the first time.  We met new friends, and ones from Barcelona in March and between us all we managed to see a successful conference draw to an end.  For once, I don’t think I was the only ‘insightful’ presence that was trying to encourage change.


It is intensely weird when you’ve only ever reached supervisor level & you’re talking to company directors like they’re factory-floor level workers.

I laugh now! but at the time it felt so wrong to be telling them off!!

It resonated strongly of ‘Barcelona’ in March when I had to do similar there, but it wasn’t ‘high-end’ company directors!

After the roundtable Sonia turned to me and chuckled

“you just told a table full of company directors off”

Then it hit me, what I’d just done


then I laughed!


Carole Sian Scrafton, CEO & Co-Founder FibroFlutters, MBS

Cheers!  Wishing you all wellness and maybe you’ll see us in Barcelona

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