FibroFlutters

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.