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All about FibroFlutters – Page 2

All about FibroFlutters

FibroFlutters disclaimers, privacy policy and information including useful posts and social media links

Please can you read our Disclaimer & Privacy notes and if you have a problem we are always open to discussion, just e-mail Carole

MANY THANKS in advance for your understanding –
from the administrator – fibrofly73 aka Carole

… we’re a Support Group
for people with Fibromyalgia, Chronic Pain, EDS/Hypermobility, Mental health, Chronic fatigue/Me, Rare & others offering friendship, support & advice in Sunderland, NE UK …
… but we also offer online support, advice and advocacy via our social media network , chronic illness portal, across the globe.


We have since added Pharma advocacy and that will be reflected on our new Group business cards.


Advocating for a Multi-Disciplinary approach to all aspects of medical healthcare. With a business model approach using all the ‘stakeholders’ I’m using a patient’s perspective of what patient-centred care, patient-included, patient-involved, patient-centric should look like and involve, that’s everyone by the way! 
You all need to pitch in!!


That here at we are not medical professionals just fellow chronic illness warriors sharing information.

Any information read or shared on, to or from this blog site should not override any advice given to you by your own Doctors.

FibroFlutters is not a selling site but we will point you in the direction to subscribe to newsletters/magazines and some offer free, some don’t! 

Do not take any work, articles or pages to be your own, including those from third partie, or any external partie links, and always accredit the appropriate authors accordingly.

Always speak to your GP first before stopping, changing or trying new medications or treatments, FibroFlutters will not claim responsibility for any loss or damage from third parties/third partie links, or any external parties..

Always be aware of Internet security and note that we cannot be held responsible for external, third partie, websites.

Remember that buying products such as ‘cure-claiming’ remedies on-line can be a risky business and again FibroFlutters will not claim responsibility for any loss or damage from third parties/third partie links or any external parties.

MANY THANKS in advance for your understanding – from the Chief Editor – fibrofly73 aka Carole

Social Links

Patient Focussed Medicine Development (PFMD)

Involving patients in the life-cycle of medicines development

Working towards a ‘patient-centric’ clinical trial process whilst engaging with Research & Patient, Health, Pharma Advocacy that I am currently engaged with that is utilising the skill-sets of varying stakeholders to help improve patient engagement within the drug development process, and of course the clinical trial process. The PFMD has also developed patient engagement quality guidelines, providing information that is clear and in lay language for all to understand alongside developing the provisions for potential training in patient engagement.

A project that we are working on as an organisation as well as myself at a personal level as a patient expert and you can read our profiles via the button link below. The initiative links are currently not working!


Excited that I am involved with the following event as a patient, health, research and pharma advocate as myself, and also on behalf of FibroFlutters, and all who follow and support us, not excluding those that don’t!

eyeforpharma Patient Summit 15 – 16 October 2019

The power of patient-led design in pharma

For 2019 the eyeforpharma Patient Summit in October, at London, includes a special focus on transforming R&D and clinical trials, demonstrating how patient-led design reduces costs and accelerates the development of patient-relevant solutions.

Just to mention a few…

Catalina Cernica | Head of Innovation Lab | LEO INNOVATION & Teresa Ferreiro | Patient and Founder of BabyBeatles both joint winners of the European eyeforpharma Patient Champion Award at Barcelona in March

Niclas Nilsson | Head of Open Innovation | LEO PHARMA

Isabelle Bocher-Pianka | Chief Patient Officer | IPSEN

Charline Coquerel Couniot | Head of Patient Engagement and Advocacy | NOVO NORDISK

Lode Dewulf | Chief Patient Officer | SERVIER

Vanessa Pott | Director, Patient Advocacy & Strategic Partnerships | MERCK

Craig Mills | Group Managing Director | FRONTERA GROUP

Ruth Wilson | Co-Founder | PERSON BEFORE PATIENT

Carole Scrafton | CEO and Founding Member | FIBRO FLUTTERS ADVOCACY GROUP

Lars Joensson | Vice President, Head of Patient Engagement | GRÜNENTHAL

Paul Wicks | VP Innovation | PATIENTSLIKEME


Alan Thomas | Founder & Patient Advocate | ATAXIA & ME

Their brochure launch on ‘Linked In’ emphasized the ‘patient’ input when developing the event and how they, ‘eyeforpharma’, intend to carry that forward to the very last minute of the event. You can access that via the button link below.

The agenda for the Patient Summit in October at London is accessible via the following button where you can also register your interest and download the brochure

Maybe I’ll see you there

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 centre.

SAVVY Co-operative

For news from around the medical healthcare industries check out my DAILY Nuzzel newsletter

WEGO Health

WEGO Health Patient Leader Connection is a fab place to meet other patient advocates and also opportunities to get involved in things. To join this closed group register to join WEGO Health via the website link on the button link above.

You can check out my profile here


Recognising Patient Leaders that are making a positive impact

“The WEGO Health Awards program was created to recognize and honor those making a difference in the online health community. It provides the opportunity for community members to thank and support the Patient Leaders and patient-centric initiatives they admire.”

Quoted from the website

‘It’s a Doddle’ Communities Map

A new platform in the guise of a ‘Communities Map’, which helps organisations that provide support to find each other and to help get the right support to those that need it at local level. #care #support #advocacy #community

‘It’s aDoddle’ formerly,

“aDoddle is working with you & your community to make it as easy for everyone to find help and support locally as it is to find a hotel or restaurant on Google Maps.”  

from the site!

Why not check out our other posts via our Archives

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