"An informal ‘patient-led’ support group based in Sunderland patient health research pharma advocacy"
FibroFlutters Patient Advocacy Organisation and Social Media Network is for anyone with, or connected to, chronic or rare disease.
An informal ‘patient-led’ community based in Sunderland, North East, UK & we are there for people with Fibromyalgia, Me/CFS, Chronic illness, Chronic Pain, EDS/HMS, mental health, musculoskeletal disorders, hypermobility, & other debilitating invisible illness including rare diseases.
FibroFlutters Social Media Network is a Global online advice and support network across many social media platforms with a presence in varying communities as well across the globe. We use this network that I have developed to do a lot of our advocacy work for patients, health, research, pharma, medical, digital health, carers, and medical healthcare related issues including public health.
We also use it to network with other chronic lifers, and also people from within other areas of the medical healthcare industries as an avenue to share and educate. It all happened because of a communication problem that needed fixing and now we span the Globe with a fantastic presence from across the pond that matches that from here in the UK & Europe putting us in a rather unique position when it comes to #chronicillness health / research / patient / pharma advocacy.
This network is also used for health and medical communications, sharing information, research, campaigns and other relevant articles related to the medical and healthcare industries including pharmaceuticals and digital health, AI and developing a repository of sorts to help educate everyone, #notjustpatients. Driving forwards the notion that a multi-disciplinary approach / patient centred approach to healthcare for people with multiple chronic conditions (including rare), and multi morbidities is required for a better and a more personalised type of care, preventative care through looking at us as a whole and not as individual conditions one by one.
Helping to increase awareness of clinical trials and their importance for the world of rare and ultra rare diseases and chronic conditions. Aiming to provide appropriate avenues for people to find trials, get together with other local / regional communities to create a registry of sorts of us all to provide patient pools for future patient engagement and research opportunities.
Building a network involving multi-stakeholders to help provide a balanced infrastructure that we can utilise when needed during our development and progress. An ongoing mission that has been going since 2014.
The Mission of FibroFlutters:
To help develop, nurture, and help to create a multidisciplinary approach to all aspects of medical healthcare so that chronic illness & rare disease patients can receive the type of care and treatments that they need.
With a focus on Ehler’s Danlos Syndromes, Pigmented Villonodular Synovitis, Fibromyalgia but, also, including musculoskeletal disorders and associated rare diseases. There are over 300 undetermined musculoskeletal conditions with many of them causing high rates of work absenteeism and disability.
Patients with these types of chronic and rare conditions are left to manage life with multiple chronic disorders and very little healthcare support and only getting to see one specialist at a time when the conditions run in line with each other sharing comorbidities etc. We need to be having our health looked at holistically and is why we advocate for a multi-disciplined approach to our healthcare.
Providing relevant health information from respected and reputed resources is important to ensure that people are educating themselves from proper places, and provide support and relief to patients, their families, and their caregivers. This also aids the advancement of public education by raising awareness of the need for multidisciplined patient healthcare pathways, and access to care, which can help to change patients’ lives for the better by meeting their needs.
We support FibroFlutters CEO Carole who has established this patient-driven and focused patient advocacy organisation and campaigns at many levels, including patient forums, as well as taking part in many global conferences, in person or via the internet.
Carole advocates and encourages more efficient patient engagement practices with a view to the better development of therapies and treatments within the pharma, and clinical, environments. Working on projects to enhance patient engagement and speaks at varying events to spread the mission of FibroFlutters. Changes are beginning to happen and better pathways to care are being developed, but it is difficult to measure the extent of those changes and there is still a long road ahead.
We provide Social media marketing for advocacy campaigns and disease awareness and share across our communities within our network. We offer empathetic support and advice to anyone newly diagnosed, long time diagnosed and also care-givers and provide information to people who want to know where to get reliable health communications.
I am usually kicking around on Twitter, but you can find me at a few places.
Carole Sian @scrufton73 OR @FibroFlutters
Sonia Hawkins Founding Five Flutter @Hawkins65S
Please feel free to chat to us about your health we also have lots of health problems and are very much patient’s underneath despite all of our responsibilities. Remember we’re not doctors or health consultants just regular patients like you.
Available for speaking opportunities as a patient or research advocate / expert / voice preferably with support towards travel and accommodation expenses.
`Social media' support via our chronic illness network for disease awareness, event and content marketing for health, medical, research and pharma. I currently curate 2 daily newsletters so if you have something to share please e-mail Carole at [email protected]
fibroflutters.com our website is deliberately designed to act as a library of resources and is currently undergoing some infrastructure changes to accommodate our expansion to reflect the advocacy work we do for all stakeholders #notjustpatients within the realms of medical healthcare industries.
Open to collaborative projects and would like to construct a regional map for all support groups in the North East UK, looking for opportunities to co-create and co-design anything that is going to help create better outcomes for the patient.
We are not fundraisers as such ourselves but we will help you to 'fund-raise' if you send us your campaigns so that we can include it on our website and in our newsletters that go out across our social media network.
We support the work of our carers and are also open to opportunities to advocate on their behalf, again send us your campaigns so that we can help to increase your voices. Currently advocating within pharma to improve engagement between carers, patients and pharma so that they can use our knowledge and experiences to create better products for us to use. Carers often know more about a patient than their GP!
Please remember that we are not medical health professionals and cannot provide you with medical advice, or prescribe medications. We are here for everyone though! #notjustpatients
Volunteering for EDS UK as an Expert Patient and for FibroMyalgia Action Uk is a huge thing for me and FibroFlutters because our lives are affected by these health conditions so much, including many other chronic and rare diseases..
We are always looking for people to help us on our social media accounts, especially on Facebook, so if you think you could help to admin we would be very appreciative.
Aside from social media I, personally, am always looking for people to help me with research for articles and posts to share in our newsletters and on the website. To keep up to date. It is very difficult because I work by myself on the website and many posts need updating. So, if you have a flair for writing, can peer review posts / articles, or even just help by checking our links all work correctly you would be helping us with the health communications / educational sectors of the work that we are trying to do.
Maybe you're a health blogger and would like to be highlighted on our site as a regular blogger, an artist who would like to run a creative corner for us, or your a person who loves to cook and share recipes that people with chronic illnesses would appreciate and could look after our food and drink section.
There are many options available and I'm open to suggestions so please don't hesitate to contact me Carole [email protected] to have a chat about what we could do. Being Wordpress savvy would be beneficial but not important.
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.
Involved as expert patient in the brand new upcoming event 'Patient Engagement Day' by Prime Global on 1st September 21. The theme for this year is #AmplifyThePatientVoice.
Keen to get involved? Check out the opportunities below!
FREE Webinar registration link: https://media1.zoom.us/webinar/register/WN_uMnY-8RuTPGK_VZXWtmpog
Toolkit sign-up link:
We have a sister group that runs their ‘Fibromyalgia’ meetings on the first Monday of the month at Millview Social Club, in Sunderland. If you’re local, and newly diagnosed, I can tell you that they will help you find answers to some of your questions. This group does require membership.
Together as groups we work, voluntarily, to help support the chronically ill in Sunderland, and for us across the NE UK and then Globally through our Social Media Network.
Our work also involves supporting FMAUK – Fibromyalgia Action UK
More to be added
The Best UK Fibromyalgia Blogs from thousands of UK Fibromyalgia blogs on the web using search and social metrics. Subscribe to these websites because they are actively working to educate, inspire, and empower their readers with frequent updates and high-quality information. These blogs are ranked based on following criteria
Read our post via the following link >>>
FibroFlutters celebrates being one of the Top-10 Best UK Fibromyalgia Blogs via Feedspot
Please click here FibroFlutters ~ disclaimer-privacy-notes-8-may-2018/
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