Merry Christmas, happy holidays & all the best for 2020. Thank you for your support.

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Hello everyone, it’s that time of year again and this year just seems to have flown past. I know we say that every year, but this year has been a hive of busy for me on the advocacy trail trying to harness the multi-disciplined voice of us as patients amongst the health, research and pharma scenes.

Next year promises much of the same as I hope to continue on my external advocacy journey, learning as I go, spreading the voices of those who can’t do it for themselves, and most importantly getting my hands stuck into real-life projects that aim to make key important changes into how patient engagement happens within research and pharma, health and medical and how we as patients can help them to achieve more as industries. Patient engagement is one important element to achieving ‘patient-centricity’, ‘human-centric’, ‘customer-centric’ end-games!

Driving forwards the idea of multi-discplinary approaches has been at the forefront of our / my work since 2014 and will continue throughout 2020 too. Please join me on our mission to help, those who can, to create better ways for people with multiple chronic, invisible and / or rare conditions get more suitable treatment plans. Plans that will serve us with easier and faster diagnostics, better all-round ‘holistic’ treatment and management programs led by teams and not an individual GP who doesn’t carry enough expertise.

In 2020 I will still be advocating the need for patients to get involved with research, showing them the importance of their involvement with the development of new medicines and treatments. Getting actively involved with companies / organisations and their projects to better patient enagagement between pharma, HCP’s, patients and clinical / academic research. I’ll even be involved directly with research projects too as a patient partner. Patients as Partners is important to me and FibroFlutters with respect to those of us living with rare and complex diseases. Working together with those who can put changes into action and not just talk about it.

Advocating on behalf of pharma to show patients that the industry is changing, it’s time to start trusting them again, especially if they want new medicines, better diagnostics, and ‘all-in all’ better patient outcomes.


It’s a time for showing gratitude to you as our supporters and without your readership, tweeting, sharing and liking we couldn’t make the impact that we do. Yes, I have successfully managed to reach across multi-stakeholders with the information that I share ‘cross-functionally’ across health, research, academia, clinical, medical, pharma and patient industries. I could not have done that by myself and each platform on our social media network has it’s own niche of followers and readers that have helped to make it possible.


It is time to pat yourselves on the back for being actively involved to help create change. It might seem like you don’t do anything, but being realistic, you do a lot because ‘word of mouth’, or, ‘click of mouse’ as the saying should now be is still a very important marketing tool. So when you have something to say your connections with us and how you share what we share is extrememly important.


Thank you for engaging.

Looking forward to doing it again in 2020, see you there bright and early raring to go!


Wishing you wellness as always, be safe, be warm, but most of all enjoy the holidays.

Carole and the team at FibroFlutters.





Author FibroFlutters Logo are proud to be actively supporting the work of AIMed Embracing #AI in #Healthcare #Medicine.


FibroFlutters Information banner
FibroFlutters Information banner

We are a Patient Advocacy Organisation & online social media communications network

FibroFlutters patient, health, clinical research, medical, pharma, digital health & AI advocacy.
Support and advice for people with chronic illnesses and rare disorders. Including, Pigmented Villondular Synovitis (PVNS), Ehlers-Danlos Syndrome (EDS), Hypermobility Spectrum Disorders (HSD’s), Fibromyalgia, Chronic pain disorders, Musculoskeletal conditions, Chronic Fatigue Syndromes / ME, and Mental Health.

We also have a Social media network for connecting multi-stakeholders from across the medical healthcare industries. It also provides us with a network for sharing information such as the latest research, news and events from a cross-section of areas within the medical healthcare industry.

We also have many other groups/pages/profiles across social media that we use to achieve our aims of Patient, Health, Research and Pharma Advocacy. They also give us the ability to provide advice and offer a friendly hand of support across many social media platforms. 

SLOGAN: #chronicillnessVOICE for everyone #notjustpatients

PLEASE NOTE:  

  • We are not medical professionals nor claim to be. Remember that you should always consult your doctor about any health problems and not solely rely on Dr Google, or on any information that you may read online through 3rd parties.
  • That this site uses google analytics to collect demographic information for content decision making purposes only and not to sell to 3rd parties.



Its A Doddle – Mapping the communities that care

By Mapping UK Charities, Community Projects, Groups & Organisations together we are creating a national resource for use at a local level. Check out our profile via this button below.


SYNAPSE / Patient Focused Medicines Development (PFMD) joined in 2019

Check out our profile to see what initiatives we’re involved in, what the work will involve and how diverse a group of people that we are collaborating with on improving patient engagement within clinical trials. Very different! Very exciting! Very Grateful!


Got something to share then don’t hesitate to get in touch with us. Also if you want to write for me in exchange for publishing privileges let me know via the e-mail link below.

carole@fibroflutters.com


FibroFlutters are continuously

Advocating for a Multi-Disciplinary approach to all aspects of medical healthcare. 
Using a model approach using all the ‘stakeholders’ and 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!!

Please note that I have opted-in to receive all the newsletters that I post from. PLUS please remember to read their privacy policies.  


Please can you read our ‘Disclaimer’ & ‘Privacy’ notes. If you have any problems we are always open to discussion, just e-mail Carole


FibroFlutters ~ CHRONIC, INVISIBLE AND RARE ILLNESS SUPPORT / ADVICE / ADVOCACY| Disclaimer | Privacy Notes | 8 May 2018


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2 thoughts on “Merry Christmas, happy holidays & all the best for 2020. Thank you for your support.

  1. You do an amazing job & I think you should be hugely proud – here’s to more where that came from in 2020! Wishing you, Carole & Team, a very Merry Christmas. I hope it’s as comfortable & joyful as possible 🎄 ♥
    Caz xx

    1. Thank you for such a lovely message. #TogetherWeAreStronger your support means a lot to myself and FF you do a grand job yourself too!

      Hope the festive time is kind enough to let you have the energy to join in, sending you some of mine Xx Carole 🦋💜🦋

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