About Us – #PatientVoice #PatientEmpowerment #PatientAdvocacy #PatientCentricity #PatientLeaders

 

This year, 2018, I took a different approach for myself personally, and also for FibroFlutters to raising awareness, by changing to representing the patient voice at places where it will help to make an even bigger difference.

My own personal work as a Patient Group Leader, advocate/ambassador/voice has led me into the world of conferences, pharma and digital health, innovation, medtech, clinical trials and Big Data, AI and robotics for surgical procedures, biopharma and a few surprising opportunities. An area that I often wondered how I could get access too when the time arose to expand our reach further into the medical healthcare industry through networking on social media.

Of course this is how myself and fellow Founding Five Flutter, Sonia Hawkins, ended up in Barcelona at the eyeforpharma 16th Annual Barcelona conference as #patientvoice and facilitator of roundtables, she was my colleague, friend and carer/assistant while we were away.

fibroflutters mental heal discussion group cover pic

Due to a number of bad experiences with social media, in the earlier days, I developed a fear of being photographed or filmed.  I am also using these new opportunities in the ‘REAL WORLD’ to help  myself, hopefully, overcome these fears to give me more opportunities for advocacy. 

A personal journey that has already began through going to Barcelona and taking part in an event where cameras were everywhere… but not in my face.  eyeforpharma provided a fantastic safe and friendly platform and ensured we were alright before, and after each roundtable.  Both of us had the same social anxiety fears as well so we would go off to our own space every now and again to gather ourselves and discuss our experiences.


I had no way of anticipating the opportunities than we gained from going to the conference and they were all completely unexpected.  ~ Carole



 

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Of course! One of those opportunities is the ImPatient Conference London UK in October this year (2018) a brand new type of ‘stand-alone’ pharma conference designed and run by patients, which FibroFlutters stand as key supporters and along with many other people have contributed to the design and agenda. It’s premier is attached to the eyeforpharma 15th Annual Patient Summit ~ London October 16-17 2018


FREE PASS for #Patients who are unaffiliated with pharma business and consultancy. 

Fancy going!? all pharma or solution providers who book via me, Carole Scrafton, for the Patient Summit Europe can have the advantage of a €200 discount.

e-mail me:  Carolefibroflutters@gmail.com


I will be available for the 2 days as a make myself visible and go and watch whatever I like, listen to whichever speakers I fancy the sound of, or even get the opportunity to sit down and chat to a few other delegates and advocates.  Come and find me for a chat!


The Im-patient Conference is new and its bold. No longer is eyeforpharma HQ in the driving seat, instead it is entirely designed, created and hosted by patients. We believe that in doing so, we will capture the true essence of what patients want – and put them in the driving seat

~ eyeforpharma Patient Summit Page 


Naturally, we’re really excited 

My colleague, Sonia and I are both also hoping to be involved with the Impatient conference, As Founding Five Flutters we are all Key Supporters as well as our group.

#PatientVoice #PatientAdvocacy  #HealthAdvocacy #Patients #Pharma 

My other role is sitting on a panel discussion, which is something that I never done before, and why I am already mentally preparing myself for what lies ahead.

It will be difficult but I’m sure it will also be fun and I will learn so much again so it will be worth the discomfort to help get the patient voice out there to pharma execs.


eyeforpharma logo

social.eyeforpharma.com/

Eyeforpharma – Mission statement:
Our mission is to make pharma more open and valued.
The ultimate driver for the pharmaceutical industry’s health is meeting the needs of patients, otherwise it will cease to matter. For healthcare to be as good as it could be, the strength, skills and resources of our industry need to be fully integrated into health outcomes and we need pharma experience at the decision-making table.
We believe the industry must focus on a business model combining service with product, with patients at the center.

A huge thankyou to Paul Simms and his team at eyeforpharma




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