In March it was the eyeforpharma Conference, in Barcelona, which I was fortunate enough to attend the whole event from the Awards pitching day right to the end before having to fly straight back to the UK.  Leading up to the event I was on the Steering Committee for ‘The Im-Patient Conference’ which was a patient designed and led pharma conference for pharma execs.  Part of my role at the event was chairing this event although I did that more Back-of-house and not on stage due to a few problems with communication. 

I was also a roundtable moderator as part of the ‘Im-patient’ conference, but sadly these sessions were blighted by poor sign up numbers and a few other issues including poor location, sound problems and lack of microphone.  Chairman Paul Simms was hosting the Innovation Stage and his voice was booming through the EXPO hall where we were also located, just made it a tad noisy for discussions to take place. Personally speaking I couldn’t concentrate.

As part of the main eyeforpharma conference in the ‘Patient-Track’ I was lucky enough to speak on a Panel: From Collision to Collaboration: How Diagnostics, Pharma and Patients Can Succeed Together.  This gave me the opportunity to voice the need for education and literacy to be addressed, to continue my patient and research advocacy efforts and put forward my views regarding an all-stakeholder approach and ‘why have a dog and bark yourself’ and how working together was sure to create more accurate and viable results, reduce production costs and generally overall help to rebuild trust between patients and the industry not just pharma.

We addressed issues connected to the advancement of precision and personalised medicine and how diagnostics could implement patient engagement practices when ordinarily they don’t get to see the patients, how technology is changing the diagnostic infrastructure and relationships with pharma and the MedTech industries.

Overall an enlightening discussion that you can read about in my review via this link –

https://fibroflutters.com/2019/04/22/chronicillnessvoice-special-edition-pharma-april-2019-eyeforpharma-barcelona-review/

Being invited back to #efpbarca this year, 2019, was indeed exciting and also an honour. The link given provides the review that will give you a few insights into my week at Barcelona with eyeforpharma as a ‘Volunteer’ Patient Advocate, and as ‘Impatient Conference Steering Committee member, attending through their ‘Patient Policy’.

A fabulous arena for networking and I met many new people, faces from previous events and overall got to talk shop for several days with like-minded folks.

Take a look at what this years conference has to offer and see why you should attend, there’s a lot on the agenda, plenty of new faces on the speaker list and many kinds of activities as well as the expo hall where many things will be happening. The link below takes you to the conference webpage. Maybe you’ll see me there! If you do, come and say hello.

https://fibroflutters.com/2019/03/30/the-burdens-of-pain-management-inflammation-and-sensitivity-to-anti-inflammatories-carole-scrafton-27-march-2019/

Bollywood night at Delhi 6 in South Shields with Tyne & Wear fibro friends night out

This time we went out for Indian cuisine and once again got to enjoy some downtime in good company whilst chatting about ourselves and our ailments, asking each for advice and generally having a very good time. Socialising is important to us because as a rule most of us do not get out very often, if at all, so we tend to miss out on real life human face to face contact. Life can become lonely, depressing and as a result help to exacerbate our health problems. Being there for each other is therefore a necessity and why we have our groups to begin with.

The food was excellent, the service was perfect and as for the company… well awesome of course!

It was fabulous evening of cultural education as we were given a talk about the history of the restaurant and the family that have been running it, insights into the food, spices and recipes along with how some are cooked. All in all a great evening had by all.

Delhi 6 in South Shields