About Us

Page 5


Where can you find us?

We have many groups, pages & profiles across social media channels to help spread awareness of each illness and appropriate charities right across the globe. A necessary community communications avenue accidentally developed into a ‘global’ social media network for people with chronic, invisible, rare illness including all those involved in their lives such as care-givers, nurses, family & friends. Our vast selection of channels serves a great purpose in our aims to share and educate about patient and health related matters in a cross-functional manner across the life-sciences and medical healthcare industries #notjustpatients. Our doors have always been open to everyone!


FibroFlutters HQ is our main hub for our Facebook network of groups and pages for our online advocacy and support group, which also spans many social media platforms including our Twitter Account @FibroFlutters, and this website which has our largest number of supporters and followers because it includes stats from a combination of our social media profiles.


FibroFlutters Super Highway >>> Our network links

The links below are in order they were set up over time

Twitter – @scrufton73 >>> Carole’s account originally set up March 2014 for fibro campaigning on behalf of Charity FibroAction.  Receives posts from fibroflutters.com.


fibroflutters@gmail.com set up April 2014 in preparation for group launch in May


Twitter  > @FibroFlutters >>> FibroFlutters Support Group for Fibro & Mental Health account set up April 2014 for Group Launch on May 12th International Awareness Day for Fibromyalgia, Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS)


You Tube  > FibroFlutters > playlists YOU TUBE set up same time as Google+ in April 2014 channel is empty as not uploaded any videos, however there is an archive of playlists.  Have only recently began to utilise it properly for saving videos, not making them. (Google+ no longer exists)


Closed Facebook Group  >  Fibro Flutters Sunderland  >>> Closed Facebook group set up in Spring 2015 by a friend, Vicky Green, also Founding Five Member and my co-founder because she was promoting the group on Facebook for me.  This group linked to FibroFlutters HQ Facebook main Page and recently formed FibroFlutters – Mental Health Discussion Closed group on Facebook as well as here, the website.


FibroFlutters  >  Website >>> set up May 2015 to mark May 12th International Awareness Day for Fibromyalgia, ME and CFS for my support group members to blog and share information as I wasn’t on Facebook for Mental health/social anxiety reasons. Also, posts out to @FibroFlutters and @Scrufton73 on Twitter; FibroFlutters HQ on Facebook, FibroFlutters on Linked In; FibroFlutters, plus, there is the Pinterest option for readers as well as in-house word-pressing, or re-blogging.  Also, accessibility to YOU TUBE sharing.  Website is easily accessible from our pages, groups, sites etc


Our Main FB Page:  Fibro Flutters HQ > @FibroFlutters

Set up in Spring – Summer2015 to make post sharing from blog site better/easier for campaigning, blogging, sharing, advocating and archiving useful articles, research, posts etc.  Also, posts out to @FibroFlutters on Twitter and is also linked to FibroFlutters Sunderland closed Group on Facebook; FibroFlutters Mental Health Discussion Closed Group on Facebook.


FibroFlutters on Linked In – Professional profile

Linked In > @FibroFlutters  >>> Set up October 2015 for Pain Awareness Month but only been using it for last 12 months (2017/18) due to lack of time and chronic illness limitations, but also lack of priority as supporting fellow patients and Advocating for FibroAction and then FMAUK after the merger in 2015 was far more important.
Twitter was a better networking platform and less invasive on a personal level.  Accessibility via Twitter sharing facility plus FibroFlutters HQ on Facebook, fibroflutters.com, FibroFlutters Sunderland Closed group on Facebook.

A little update: We now have a really great diverse set of connections from across many sectors of life-sciences and the medical healthcare industries, including pharma, which is helping us to be as ‘patient/person-centred‘ as our pharma friends and everyone else working towards patientcentricity. Networked in with people from all over the world striving to make changes and improve patient outcomes, include patients and carers within clinical trials, trial recruitment and product marketing research. A great avenue for sharing health related news from a ‘cross-functional‘ perspective, highlighting events, campaigns and relevant surveys as well as our Nuzzel newsletters which are well received.


FibroFlutters Mental Health Group on Facebook set up in 2017 – group cover image designed by Fluffmeister Arts ~ Carole Scrafton

FibroFlutters Mental Health Group on Facebook set up in 2017

Set up as a means for people to discuss all matters related to mental health.


Its A Doddle – Mapping the communities that care Joined in 2018

Making it ‘aDoddle’ for you to find help, give help or get connected locally
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.

By Mapping UK Charities, Community Projects, Groups & Organisations together we are creating a national resource for use at a local level.


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!


WEGO Health offers enterprise and on-demand solutions that allow organizations to leverage the patient experience and expertise in the design, development and promotion of their products and services.

WEGO Health profile set up in 2017-19

Wego Health are the world’s largest network of over 100k Patient Leaders, from across a huge range of all chronic, invisible and rare health conditions and topics.

This Patient leader’s network also collaborates with pharmaceutical companies, life-sciences companies, agencies, consultancies, startups and all types of organisations from across the medical healthcare industries.

As an individual who co-ran a patient group I joined the network as a Patient leader and then introduced FibroFlutters as an organisation this year, spring 2019. The FF profile isn’t quite complete and I’m not quite ready to don FibroFlutters with a ‘merchant’s hat’ just yet!


I’m honored to say I’ve been nominated for the #WEGOHealthAwards! 2019. These awards seek to recognize Patient Leaders who are making an impact with their advocacy. Learn more & nominate today


WEGO Health is a mission-driven company dedicated to transforming healthcare by harnessing the experience, skills and insights of Patient Leaders.

50 Milk Street, 16th Floor 
Boston, MA 02109


FibroFlutters on Instagram Recent! Spring 2019

A recent addition to our collection of channels on the network as I was given the opportunity to upgrade my own INSTAGRAM to include FF. This is not a channel that I have used very much but am learning how best to use it. For advocacy and sharing posters, events and campaigns it appears to be quite good.


FibroFlutters on Pinterest Recent! Summer 2019

Another recent channel added to our network through attaching a business profile for FibroFlutters. Personally, I have been pinning for a few years and my boards have, mainly, all been about health related matters so it made sense to co-share with FibroFlutters so they had their own profile and not just a board on my own personal profile.

My personal account has been running for a number of years now, feel free to connect with me and my boards


Our Motto for our Fibromyalgia advocacy is:

lets-help-to-make-ourselves-visible-ffhq-motto

🙂
🙂

Finally, laughter!
A very important tool when battling any chronic illness whether you are the patient, family member, friend or care-giver 

Fun Posts always welcome


Location:

Locally in North East England, Sunderland – Tyne &Wear – UK

Online Global Community Network across ‘Social Media Platforms’.


FibroFlutters Information Poster:

FibroFlutters info flier

Page 5

2 thoughts on “About Us

We'd like to know what you think...

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.