About the organization
Basic details : patient-led patient support groups for people with chronic, invisible and rare illnesses at local/regional capacity - NE UK
patient / health /research and pharma advocacy - FibroFlutters is also a Global online advice and support network across many social media platforms with a presence in varying communities as well across the globe. #Notjustpatients and for all stakeholders.
FibroFlutters is an informal ‘patient-led’ support group 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 #invisibleillness.
Here in the UK it is the post-code lottery as to whether some drugs are made available to you and patient’s across our country petition all the time for issues related to it. Campaigning on a Global scale is quite a large mission, but we have done it for Fibromyalgia, MECFS, Lyme, and many more, to get the attention they need and deserve. Campaigns are a fabulous way to help educate others, whether they are patients, or carer’s, family members… even health professionals! and now even pharma!
Mission : Aiming to help improve the lives of patients by promoting multi-disciplinary approaches to all aspects within the medical healthcare industries, hoping to bring all stakeholders together to help work together on patient engagement initiatives that will improve patients outcomes... but also improve outcomes for all stakeholders involved.
Advocating for a Multi-Disciplinary approach to all aspects of medical healthcare.
Aiming for multidisciplinary approaches to medical healthcare, or patient-centricity, patients-included, etc my reasons for this are to encourage people from different sectors to take a look at what is happening in other parts of the healthcare industries, spread the patient voice and advocate for changes where they are needed.
Vision : Better systems for patients with multiple conditions and a desire to have a multidisciplinary approach to our healthcare from all stakeholders involved. Multidisciplinary Medical Centres for people with multiple conditions so they can access better care and treatment plans, healthcare pathways.
Better access to research and trials through a one-fits-all data hub that is ruled through patient opt-in, spoiled by regulatory and policy issues of higher governmental levels. How to change those policies? who to access to get the opportunity to help create changes? All-in stakeholder approach may be the answer
'Multidisciplinary Medical Centre’, which would be utilised by all stakeholders so that patients had access to them all and our data is kept in one place and is accessible to all parties.
Organization primary focus : FIBROFLUTTERS
Structure : Non-profit support group / patient organisation
Affiliation : NON umbrella orgs
Fibromyalgia Action Uk
Ehler's Danlos Support UK