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Special edition Happy new year & ‘Happy birthday’ #chronicillnessVOICE 1yrs young| January 2019 ~ a health newsletter for everyone! #chronicillness #notjustpatients

‘Attending an event during the middle of hibernation was a little daunting but I wasn’t going to let that stop me from going. ‘
What a way to celebrate our newsletters 1st birthday

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It wouldn’t be right to not mention the ‘Im-patient Conference’ Barcelona March 2019, and luckily alongside some other fine patient advocates I was voted onto the Steering Committee.
Many of you will have been wondering why there’s been no newsletters recently and this is one of the reasons why.
Naturally, also, because I actually reduce my work load during December and January while I hibernate and recharge my energy for the year ahead.

The Steering Committee for Im-Patient Barcelona

Carole Sian Scrafton
Patient, Advocate and im-patient founder
Founding member FibroFlutters support group’s – Health / Patient / Research Advocates #notjustpatients FibroFlutters has a fabulous social media communications avenue / chronic illness portal for everyone, #allstakeholders & #notjustpatients.

Matt Eagles
Patient & Patient Advocate & Head of Patient Engagement at Havas Lynx, Matt inspires everyone he meets.

The following video tells Matt’s story of living with Parkinson’s

Head of Patient Engagement at Havas Lynx, Matt inspires everyone he meets. This is Matt’s story of living with Parkinson’s.

Alan Thomas
Patient and Patient Advocate
Founder of Ataxia and me – a patient focused rare disease support group.

Brigit Bauer
Patient and Patient Advocate
Journalist, Digital Health & Social Media Expert, Speaker. EUPATI Fellow, Blogger.

Elly Aylwin-Foster
Writer, digital strategist and lifelong patient with a career background in communications and market research
Patient, Advocate and Writer

Andrea Ruano Flores
Patient and Patient Advocat
10 years cancer survivor after childhood diagnosis e

Candace Lerman
Patient, Advocate and Of Counsel

Face of HR 1223, the OPEN Act, which would incentivize pharmaceutical companies to repurpose products for rare diseases

It is an honour to be a part of the team designing the event which will happen as part of the eyeforpharma 17th Annual exhibition & Awards conference in Barcelona 12th – 14th March 2019.
Being a founding member / supporter of ‘Im-Patient’, which was born from an idea at the ‘eyeforpharma’ conference in 2018, it also makes it feel quite special to be working with my peers to design this event for pharma one year on.
How does the ‘Im-Patient’ conference measure up to those initial ideas that gave it its basis last year?
Well that is something to discuss in April’s special edition of #chronicillnessVOICE, of course I will need to get some feedback from the Im-Patient Philadelphia side of things too.

17th Annual
MARCH 12-14, 2019 | Centre Convencions Internacional Barcelona (CCIB)

As well as being involved with the Im-Patient conference I will also be taking part in a panel discussion on Day 1 alongside Patrick Langecker, Thoughtleadership Patient Experience from Siemens Healthineers and Melanie Capewell, Group Head Commercial Development. SYNLAB International.

Why not pop along to hear the discussion?

2:00pm – 2:40pm | Day 1 | Pink Room

Panel: From Collision to Collaboration: How Diagnostics, Pharma and Patients Can Succeed Together

  • In the new era of personalized medicine matching the right patient with the right area requires pharma and diagnostic collaboration
  • Understand how the two can collaborate, combine strengths and establish a true partnership that will lead to better patient outcomes

There’s plenty of interesting things being discussed and addressed this year and I’m certainly looking forward to taking part again. Why not see if you can find me and say hello?
Maybe you have a question, or two, for me, or would just like to chat over a coffee about what it is that I do.
Looking forward to meeting new people, as well as seeing those that I’ve already met, and hopefully creating some new relationships that will help with ‘my’ own pursuits of patientcentricity as a Patient-led group leader and chronic illness information portal manager.

Of course my fellow Founding Five member of FibroFlutters Sonia Hawkins will also be attending as a ‘carer voice’ as well as a ‘patient advocate’ and will be taking part with roundtables for eyeforpharma. Sonia will also be participating with part of the Im-Patient Conference.

Check out the eyeforpharma 17th Annual exhibition & Awards conference and the Im-Patient conference, their speaker line-ups and agendas via the button below

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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