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

Welcome to this special edition of #chronicillnessVOICE and many thanks for your ‘patience’!

Please note the new layout with a multi-page experience making it easier to navigate

Many obstacles, hurdles, hoops alongside ill-health, lack of broadband for best part of 6 weeks and of course not being of the right mindset for writing have all made it’s production problematic.
However, better late than never!

Including Carole’s stern words about who and what is a patient expert, why it does matter?… because the plan is to engage with pharma and not confuse them. No offence is intended, freedom of speech for all, remember no-one was wrong!.


  1. Contents
  2. #efpPatient Patient Summit Europe – Introduction, thankyou’s and feedback for eyeforpharma
    • 17th Annual EYEFORPHARMA BARCELONA EXHIBITION & AWARDS MARCH 12-14, 2019 | Centre Convencions Internacional Barcelona (CCIB)
    • eyeforpharma Patient policy
  3. DAY 1 – 16th November 2018 – Interactive Roundtable
    • Interactive Roundtable sessions bringing patients and pharma together around one table
    • Education is a key element that we all recognise as being important so these roundtables are all part of our ‘communal’ learning as stakeholders.
    • So, What did we all have to contribute to the discussion and what were the key take-aways?
  4. DAY 2 – 17th November 2018 – Panel Discussion for Patient Summit: Candid patient perspectives on the good, the bad and the ugly of service design
    • PUNCH LINES – Messages for pharma
    • What is a Patient Expert? In response to the heated debate that took place I candidly discuss the essence of this term in reference to advocacy and pharma as well as its relevance to helping create new partnerships and alliances.
      • Just a few things to say! FibroFlutters CEO Carole’s personal response to the ‘patient-expert’ debate and panel discussion.
        • Does it really matter?
        • Why is it important to know what a patient expert is?
        • Recognise that we’re #notjustpatients
        • All stakeholder approach
  5. An in-depth look at Carole’s messages for pharma for the Panel discussion: Candid patient perspectives on the good, the bad and the ugly of service design
    • 3 – You know what to do:
      Link to  eyeforpharma Webinar thanks to Agnitio
      Expert insights: Market access’ hidden digital opportunity
    • Corporate Responsibility
    • A link to REPTRAK’s latest Global Corporate Responsibility report 2018
  6. Another thankyou
    • eyeforpharma social links
  7. DAY 1 – 16th November 2018 – Interactive Roundtable – Im-Patient – Introduction
    • Im-Patient – Steering Committee
      • Items on the Agenda
    • Im-Patient – Roundtable: Connecting with patients
      • So! what did our table of Pharma Director’s have to say
      • Social Media Patient Platforms / Networks
      • Questions for consideration
  8. Im-Patient – Sonia’s Carer-Voice SHOUT-OUT
    • As FibroFlutters patient-carer advocate, who joins me on these conference opportunities, it is only right that she has a space to air her words through our magazine as well.
    • Why just collect the views of patients when the voice of the carer is just as important?
      And, who is educating them?
  9. Accreditations
    • Last words…
    • Endnote…
  10. Thank you very much for taking the time out to read my special edition of #chronicillnessVOICE.
  11. FibroFlutters notes, fliers, logo, disclaimers and privacy policies
    • Look at his Communities Map being created by adoddle.com / if Everyone Cares and go pay us a visit there.  A place for charities and NFP’s / Charities to live and be able to easily locate each other
    • Why not visit our archives

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