About FibroFlutters, who we are and what our aims are
Read this to learn about FibroFlutters, who we are today. There is a link included to an earlier version that gives you an in-depth view of our development since 2014. We have become more than a local community group, which in reality was an essential move. Communication in our current age does not happen as much in-person and was becoming that way long before the pandemic. Group members are too sick mentally as well as physically, or are at work, can’t get childcare, live too far away…. and so on!
Online accessibility became a priority need to provide people with an essential communication avenue. Not just to keep in touch, but to have access to health information and places for accredited support and advice.
We advocate for better services for patients and their care-givers, improve patient outcomes. This includes supporting the areas of medical healthcare industry that are creating those changes. Multi-stakeholder approaches to create better healthcare for everyone involved #notjustpatients.
We are currently seeking partners / trustees to join us as we move to apply for official status. If you feel you have skills that you can bring to help enhance us and are interested please contact us. email@example.com
Please remember that everything we do, by the people who do it is unpaid and all voluntary!
Please Note that this page is always under construction with elements and information being added
About FibroFlutters, who we are and what our aims are
We are a Patient Advocacy Organisation & online social media communications network. Our services are for people affected by chronic illnesses and rare disease. This includes care providers, health professionals and those within the medical healthcare related industries. #notjustpatients
What chronic illness and rare diseases do we advocate for at organisational level.
Our doors open for everyone affected by chronic and rare illnesses. We will endeavour to point you in the right direction for help with your condition. However, at organisation level we provide extended support for the conditions listed below. The extended support will involve support group style activities such as specialised zoom meetings.
We can’t provide this extended support for all conditions due to the extensive and exhaustive amount of conditions. This doesn’t mean that we won’t share your campaigns and related literature for your disease and organisations. We are all stronger together so we are here for you to the best of our abilities.
Chronic Pain, Fibromyalgia, Arthritis and Musculoskeletal related Disorders
ME and Chronic Fatigue related Disorders
Undiagnosed / Undetermined
Ehler’s Danlos Syndromes & Hypermobility Spectrum Disorders
Pigmented Villonodular Synovitis
Other rare musculoskeletal disorders
- The work we do involves disease awareness, health awareness, and, helping to point people in the direction of where to get legitimate health communications and information. As well as this we attend events and use patient voice to get important messages to help create better systems and processes for patients.
- Our efforts also include advocating for the need to improve patient engagement processes within the drug development. For instance, getting involved with projects that help us to do that like the How to guides that we have helped to create with Patient Focused medicine Development. Made with patients and large teams of multi-stakeholders from across the health, medical and clinical research landscapes including academia and pharma.
- Increasing awareness, and providing education about clinical research to encourage people to get involved with research and clinical trials is high priority.
- Bridging the gap between stakeholders is a different type of awareness raising. It involves sharing events and campaigns by clinicians, pharmaceutical companies, patient led projects, healthcare providers… the list is quite variable. We have newsletters to ensue this which uses our slogan – #chronicillnessVOICE for everyone #notjustpatients
Events and building relationships
Events are great places to network and develop new connections and partnerships that help us to pursue our missions, aims and goals that are noted below. The type of events come in varying formats such as forums, webinars, online meetings, conferences and health summits. It where relationships are forged and possible collaborative project ideas are discussed.
The Coronavirus Pandemic has seen a new way of providing events online that makes networking a little less likable. There is something really satisfying about meeting people over a cuppa and within the wonderful atmosphere that you get at events. Many of us from the World of Patient Advocacy are wondering if Face-to-Face events will return to normal. We miss meeting each other and the social aspects of conferencing.
Why do we favour Multi-stakeholder and Multidisciplinary approaches.
We endeavour to promote the idea of a multidisciplinary approach to medicine.
Our open door policy to everyone connected to our care and lives with chronic illness developed at the start of our journey. When we began back in 2014 we were a local support group for people with Fibromyalgia and associated mental health issues. We realised as co-founders that we did not just have fibromyalgia and a need to address mental health anxieties. Fibromyalgia was a ‘secondary’ health condition for the majority of us. Aside from that a lot of the symptoms were illnesses in their own right. Seeing doctors was difficult as they only addressed one condition and not the whole picture. Our decision to advocate for better multidisciplinary approaches was made. We needed to be seen by a team of relevant clinicians in order to gain the best health care. By using this type of approach they could evaluate our conditions alongside one another.
Our idea for multidisciplinary health centers for people with multiple conditions was born. You can read about this in a previous ‘About Us’ via this link:
Mission /Aims / Goals
- We aim to provide relevant health information from respected and reputed resources to those who request it. Our goal is to ensure that they are educating themselves from proper places. Pursuing our wish to provide support and advice to those with chronic and rare conditions
- FibroFlutters has a goal to keep developing its ‘social-media communications avenue’ for connecting multi-stakeholders from across the medical healthcare landscapes.
- To develop a support avenue for people with ultra rare disease Pigmented Villonodular Synovitis through our Rare Disease Arm Zebra Strutters. Goal to produce our own patient registry.
- Create and maintain our newly launched Rare Disease support arm Zebra Strutters.
- Help and support charitable organisations that support us and who we have connections with. For instance, Fibromyalgia Action UK, Ehlers-Danlos Support UK, Pain Concern, ARMA, and many more…
- Aim to maintain a chronic illness portal for everyone, all stakeholders that is perfect for raising awareness & sharing information. #notjustpatients
- One of our wishes is to give people the opportunity to share their experiences with others like themselves. Plus it is important to know that they are not alone.
- To encourage our readers to always check new health symptoms and problems with their healthcare providers. We aim to promote a sensible attitude towards people taking better care of their own health. We want them to go to appointments well educated, and, prepared to talk about their health.
- At FibroFlutters we have a deep interest in multi-stakeholder projects that aim to improve patient engagement processes. Projects that will go on to create better patient outcomes.
- Continuously advocating to help develop, nurture and help to create multidisciplinary approaches to all aspects of medical healthcare. Hoping that #chronicillness and #RareDisease patients can receive the type of care and treatments that they need.
- To encourage patients to get involved with research and to help enable education about research, and clinical trials.
- Aim to raise awareness of chronic and rare illnesses of our members. Also, for our friendly peers, partners, patient and health communities. Campaigns are a fabulous way to help educate others, whether they are for patients, carer’s, family members. Even health professionals, researchers and pharma!
Words from our CEO & Co-Founder | Editor in Chief
My thoughts about having a multi-stakeholder network with a global following for chronic illness and rare disease.
By Carole Scrafton, CEO and Co-Founder | Editor in Chief
Being connected to all stakeholders, and welcoming everyone to our network #notjustpatients is a way to show that we can communicate with each other. If it is possible share that then collaborative work should also be possible, which of course is all within our efforts to prove that a multidisciplinary approach to our healthcare is a viable and much-needed request from chronic patients with multiple conditions, and co-morbidities, or, multi-morbidities.
Having followers from across the globe gives us a global insight into how chronic life is the same all over the World. However, how we are treated and cared for is not the same in each country.
In the beginning
I was so involved in building the infrastructure of FibroFlutters to begin with in 2014-15. We needed a proper communications system across all the social media platforms to keep in touch with each other. Not everybody was on Facebook, or twitter, in fact some didn’t even have e-mail access due to not affording a computer, or the internet bill.
Accessibility was one of our main issues to address and we all lived regionally within the North East UK. Without knowing it I created a communications avenue across varying social media platforms. Back then, I called it our ‘Super Highway’. We already had a substantial following from America.
One main reason that our presence began on social media though, was for advocacy campaigning. Our network grew with other Fibromyalgia groups and chronic illness bloggers from across the globe, some of which are still with us today. However, after a few years it became apparent that online advocacy just wasn’t enough. If we wished for real change to occur then getting our voices heard would need new approaches and a much wider network. It was time to push forwards and expand ourselves. We had already embraced chronic illness as a tagline to replace fibromyalgia as a singular illness that we supported in 2015-16. We wanted people to know that we were not just a fibro group any more as we had developed, expanded and become multi-faceted.
By 2017, I began to look at how to incorporate the research and pharma industries into our advocacy work, for instance, projecting our voices further to the outside world.
Pharma taught us about Multi-channeling
It took me 2 months of researching to spot that all stakeholders were working on these patient centered processes while I’d been designing a ‘Multidisciplinary Medical Center’. Centers that would be utilised by all stakeholders so that patients had access to them all. We also considered how our data could be kept in one place and accessible to all parties through using data hubs.
By 2018 we were speaking at pharma events with the first one being eyeforpharma Barcelona Conference. I headed there with co-founder Sonia Hawkins a patient and a caregiver. We learned that industry had been working towards patient centric ideals that kind of mirrored our multidisciplinary ideals. As well as that it came to light that I had created a multi-channeled network > our super highway! Our ideas were welcomed and so were we.
This led to our aim to become a true patient centric, patient-led, patient group. If we achieve this we believe it will help develop and increase patient empowerment and patient voice through better patient engagement. For instance, within the realms of research, healthcare providers, and pharma. It should also contribute towards bridging the current gap regarding ‘accessibility’ for patients. We believe that whilst building a communication avenue between patients, HCP’s and pharma, and all other stakeholders within the medical healthcare industry it is possible.
Naturally, I have steered FibroFlutters into the middle of all the stakeholders as if to draw them in towards us, and it is working too.
We use this network to do a lot of our advocacy work, but we also use it to network with other chronic lifers, and also people from within other areas of the medical healthcare industries. It all happened because of that initial 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. This puts us in a rather unique position when it comes to #chronicillness and #RareDisease health / research / patient and pharma advocacy.
‘Patients’ not ‘People’
Encouraging our members / followers /readers to view themselves as ‘patients’ is proving difficult, but industry has labelled us this way. No-one likes labels especially the chronically ill who have endured years of negative experiences. In fact I am under the impression that we don’t like it very much at all to be called ‘patients’. I know that I don’t like it because I’m a patient 24/7 and I don’t need titles to remind me of that fact. Everyone has a reason of sorts for these things, but the one to blame is that change scares people, the threat of change scares people, even though they shout for it.
Global Reach and Social Determinants of Health
Our illnesses aren’t different because we live thousands of miles apart, but how medication policies work are what make it all different depending on whereabouts in the World that you live. Environmental factors and economy also play a huge role on healthcare across the globe. Access to care, is not easy everywhere, not cheap and in some countries just not available at all.
The treatments / medications are different from one country to the next. Drug pricing issues and the opioid crisis are affecting patients and causing many to take their own lives, which just shouldn’t be happening. People are being made homeless and going without pain medications , or other key medications due to poor patient access.
These issues have become more prevalent as a result of the Covid 19 pandemic as each country battles to still care for their sick and disabled whilst dealing with the infected populations. Drug shortages have occurred everywhere and access to care has been complicated global-wide.
In the UK we also left the EU and it has left many of us panicking about medication and treatment supplies as a consequence. Leaving the EU during a pandemic wasn’t planned of course, but it certainly was not good when we were under tremendous strain as it was.
It is important to mention these issues to get them noticed, and remembered.
Third world countries don’t have the same accessibility to information and basic communication avenues. Networks like this open up opportunities for them to connect and gain insights into chronic health information. This website gets visitors from all over the globe looking for information. We are proof that there is a need, proof that they are seeking help and it is up to us as communities to hold out our hands and help where we can.
Sometimes, as communities we need to join forces. We will unite our voices and spread our campaigns across the World. If we want all stakeholders to get the message that we are sending then networks like ours are how we do it.
Education is just as important as campaigning, from all sides of the fence, and #notjustpatients should also be learning in order to keep a balanced progression. Education is important if stakeholders within the medical and healthcare industries wish to succeed in gaining our trust enough to work with them. Education is key to help everyone understand how the industry is changing and in what ways the changes will benefit all stakeholders.
One key problem that fits under the ‘education’ umbrella, and one that often get’s said to me, is that patients don’t understand all the different jargon’s. To be honest who can blame them. This isn’t just patients on meds with foggy brains either!
Industry will be using digitalised processes and systems to make a streamlined job of their work. The hope is that the transition into the new World of Digital Health will be a relatively smooth one. It is already upon us all and the impact of COVID19 has forced digital transformation to the forefront. Let’s face it, how many of you use health mapping apps, or apps that boost your mood and send you memes of positivity. Artificial Intelligence in medicine and healthcare is advancing by means of technology for treatments, surgical procedures and research.
Importance of social media networks to industry
As people from within the health and medical landscapes you have been wanting to know where to find us. We have told you that we live on social media and we have been misunderstood by many. The fact is that through connecting and contacting networks like ours you will open doors. You need to ‘engage’ in order to engage!
Patient engagement will never improve if you don’t accept that you need to embrace social media. The old adage of ‘it’s not what you know, but who you know’, should be at the forefront of your minds. It is called a network for a reason!
Communities and Empathetic environments
Finally, it would be remiss to not mention the huge benefits of having a global reach with our multi-stakeholder network. The access to others with our conditions is key to our health management. Community support is well documented to help people when provided with empathetic environments. Communities provide spaces where they can speak freely about their lives with chronic and rare conditions. Consider those with rare, and ultra-rare diseases. Having access to networks such as this is the only way for them to find others with their conditions.
Take a look at our friends, partners and those we support
…that we do offer advice and support for any condition and will always strive to point people in the direction for where to find information and proper support communities.
We support many organisations across our network, and not just our fellow patient, and health, advocate peers. There are companies of varying types from pharma, academia, research, and charities. Also, for instance, covering clinicians and health professionals, clinical researchers, AI in medicine, public health and Government bodies, health and medical communications.
As well as that we also have a few different partnerships with different businesses too! When we receive items of value from our partners in return for our services we will always disclose it. For example, sometimes we take part as media partners in exchange for event access and exposure. In the event of speaking roles and monies offered it goes to the organisation and not the advocate.
We support our friends with Hooves that support Rare Diseases…
Ataxia and Me charitable organisation / Alan Thomas
Cambridge Rare Disease Network is a platform for change. It is the infrastructure that unites patients, advocates, experts and leaders to address the challenges faced by people affected by rare diseases. By sharing knowledge and experience, the journey towards better diagnosis, treatment and support for patients and their families is smoother and more certain.
Indo US Organization for Rare Diseases (IndoUSrare)
Building Collaborative Bridges between the Western & Eastern Hemispheres
A non-profit 501(c)(3) organization focused on accelerating diagnostics and therapies for rare diseases
People With Empathy – Rare Empathy (partners)
People with Empathy connects key stakeholders in healthcare in order to improve the quality of life of patients and care partners. We are bringing together a team with perspectives from multiple disciplines in health care, health research, health technology, patient and caregiver communities.
Rare Patient Voice (partners)
Rare Patient Voice connect patients and family caregivers with confidential research studies and surveys and pay participants on a $100 an hour pay scale. Their studies and surveys are opinion based and are all about the patients and caregivers experience to help improve treatments, products, and services. They are expanding outside the US so please get in touch if you wish to find out more. Aswell as this they are also for chronic illness and rare diseases, just like we are!
We are happy to embark on this new partnership with Rare Patient Voice by being part of their referral program.
Get paid for your opinion
Patients (16 +) and Caregivers (family, friends) of any disability, disorder, syndrome, disease, or condition are provided an opportunity to voice their opinions through surveys and interviews to improve medical products and services.
Your information is kept confidential, and never sold or shared. You will be invited to participate in surveys and interviews, where you will earn cash rewards. We pay on a $100 an hour pay scale.
Click on the link and sign up at ‘What Happens Next‘ below:
Please visit their website to learn more about who they are and what they do. You can do that via this link: Rare Patient Voice
Findacure is a charity that is bringing the rare disease community together. FibroFlutters are on their Mentoring Scheme and our year of taking part ends at the end of April 2021. We will pursue to reach the aims that we set though which, primarily, stands at achieving official status. It is a wonderful scheme and to be recommended. Due to the pandemic I chose to restructure and strengthen oour infrastructure before applying for status. As a result our Rare Disease Advocacy support arm ‘Zebra Strutters’ was created.
The ED Society – Ectodermal Dysplasia
Rare Disease Charitable organisation run by my Findacure Mentor.
“A charity dedicated to improving the health and well-being of people whose lives are affected by Ectodermal Dysplasia (ED). We work together with people who have ED, their families, researchers, health and other professionals to develop and share expertise, increase awareness and understanding, and assist with the day-to-day management of ED.”
FREE SUBSCRIPTION for a quarterly magazine.
Friends and Partners within the Industry
Carole and FibroFlutters have been actively involved with PFMD and The Synergist as members of multi-stakeholder working groups. The initiatives involved designing and producing ‘Practical How-to Guides for Patient Engagement’.
Carole is now listed with antidote as a patient who can be consulted by companies looking for patient voice and input during building their trial designs.
As an organisation we are proud partners with Jeeva with regards to their approaches and ideals regarding patient registry platforms. Working towards meeting the needs of the patient organisation by providing low cost services and data governance so that they can own their own data.
With more than 100 national patient organization partnerships and over two million members, Inspire has created the most authentic platform for patient engagement. We have been supporters for a number of years of the work by Inspire who are the ‘Leading social network for health that connects patients and caregivers in a safe permission-based manner’.
“We believe that patients and caregivers need a safe place to support and connect with one another.” Patient & Caregiver check out the health communities. “Inspire provides that place for over one million patients and caregivers.”
‘AIMed is the driving force ensuring the healthcare sector is not left behind. Our goals are to eradicate challenges, define AI enabled solutions and create an efficient workplace, with patient outcomes at its core. Our aim is to assist medical professionals to discover new ways to incorporate advances in technology to help the way they work. The AIMed portfolio is instrumental in reshaping the mindsets of individuals and the future of medicine.’
Convenzis is a family run company that delivers high-quality content focused programmes with over 50 years of combined experience across the team in in-person and virtual conferences. They specialise in bringing key stakeholders together across Healthcare, Private, Third and Public Sector. We support this company through social media sharing their upcoming events.
Do you want to keep up to date with all of their latest events, news and offers?Subscribe
Putting patients first
Digital and patient health services putting patients at the forefront of clinical trials
READ THE RECAPmdWebinar Recap: How Can We Improve the Patient Experience in Clinical Trials?
Patient Centricity webinar that Carole participated in with Andrew Schorr, Co-founder and President at Patient Power LLC & Nuala Ryan, Clinical Research Consultant. Moderated by Valeria Nicoli-Carr, VP, Patient Engagement and Recruitment at MDgroup. July 9 2020.
WATCH IT BELOW
Founding member Carole worked as a patient partner on a research product and became a patient researcher and author. You can read about it via this link: What pharmaceutical company leaders say and what patient leaders think. Check out our interactive poster that was presented at DIA Global 2020 virtual conference.
What pharmaceutical company leaders say and what patient leaders think: Quantitative and qualitative analyses
Authors: Karen L. Woolley, a / Carole Scrafton, b / Amanda Boughey, c / Lauri Arnstein, c
Presented at DIA GLOBAL 2020
‘Words CAN matter. This research indicates that pharmaceutical company leaders (eg, Board Chairs and CEOs) could help drive a patient-focused culture by enhancing the frequency and context of their use of the word ‘patient’ in their Annual Reports.
This quantitative and qualitative research has also identified a potential new metric for assessing the patient focus of a pharmaceutical company. This metric is relatively quick and easy to calculate, non-tokenistic, low cost, transparent and reproducible.’
Participate as advisors, speakers, panelists and roundtable moderators in patient advocate capacity for pharma events. We are media partners for varying events by all of them with a passion for patient engagement and industry using responsible / sustainable business practices. also supporters of NetZero.
The Conference Forum has a very specific focus – developing specialized events for professionals in the life science industry. Our goal is to create the best content in an ideal forum for the exchange of ideas among peers and networking for pharmaceutical and biotech professionals.
Participated at Patients As Partners Europe 2021
A #multistakeholder working group made up of pharma and patient advocacy who as part of a large team developed new guidelines for engaging patients in the early R&D stage of medicines development.
An initiative with Patient Focused Medicines Development (PFMD)
Kinexum – Translational Research & Strategic Services
Kinexum is an international healthcare consulting group specializing in regulatory strategy, clinical development, and commercialization. We support their ‘Targeting Metabesity‘ events
We are sometimes media partners for Data Bridge Market Research events
- #Innovation (9)
- 'OIL' have you know! (8)
- About Us – FibroFlutters (16)
- Academics (9)
- ADHD (11)
- AI in medicine (31)
- All things in the name of fun (8)
- Alternative / Complementary Therapies & Treatments (120)
- anxiety (14)
- Aromatherapy (17)
- Arthritis (275)
- Articles (373)
- Ataxia (2)
- Autism (1)
- Autoimmune (180)
- Awareness campaigns (226)
- Awareness campaigns, events, blogs, petitions & posters (124)
- back pain (2)
- Back Pain (1)
- Bi-polar (1)
- big data (26)
- Biochemistry (28)
- Biomechanics (1)
- Biomedical scientists (5)
- Blogs / Bloggers (393)
- Brain inury (2)
- Bursitis (2)
- cancer (142)
- Cannabis / THC / Marijuana (2)
- Care givers (18)
- celiac (15)
- Central Sensitivity Syndromes (9)
- Charities (122)
- Child health (29)
- chronic illness (697)
- chronic pain (440)
- Chronic SoMe platforms (48)
- Chronic Widespread Pain (10)
- Chronic/Invisile illness NEXT MEET UP (5)
- clinical trials (38)
- Clinician Series (1)
- clinicians (1)
- Collagen disorder (121)
- conference (29)
- Cystic Fibrosis (3)
- data privacy (3)
- data silos (2)
- Deep learning (14)
- Definitions Of Fibromyalgia (3)
- Dementia / Alzheimers (145)
- depression (15)
- Diabetes (157)
- Diagnosis Dilemmas (20)
- Diagnosticians (6)
- Digital Health (65)
- Disability (331)
- Drug development (69)
- EDS (83)
- EDS news and info (42)
- Educational (138)
- Endocrinology (22)
- EVENTS (97)
- events (121)
- eyeforpharma (139)
- Fibro – What's that? Find out here! (4)
- Fibro MeCFS online NEWS & INFO sources (199)
- Fibro News (232)
- FIBRO POSTERS (10)
- FibroFlutters (21)
- FibroFlutters Home News (70)
- FibroFlutters Milestone (37)
- Fibromyalgia (428)
- FMAUK (89)
- Food, drink and recipes (106)
- Fun-pics (4)
- Gastro / Gut / Bowel (93)
- Geneticists (3)
- genetics (31)
- genomics (15)
- Global resources (9)
- Goverment Publication (4)
- Health and medical (11)
- Health Care Providers (15)
- health ergonomics (2)
- Healthcare (394)
- Heart Health (88)
- HIV (2)
- Hobbies (8)
- HOME (13)
- Homecare (4)
- HSDs (138)
- HYPERMOBILITY (204)
- Hypermobility Spectrum Disorders (153)
- im-patient (8)
- Industry & business matters (6)
- inflammatory (6)
- Info site (409)
- invisible illness (490)
- Irritable Bowel Syndrome (IBS) (6)
- JHS (162)
- Join the Community (72)
- Juvenile arthritis (91)
- Lab Technicians (6)
- LUPUS (17)
- Lyme Disease (65)
- Machine learning (15)
- Mainly Medications (17)
- MAY 12TH (76)
- MCAD (6)
- ME CFS (255)
- Media (19)
- Media Partners (5)
- medical (6)
- Medical Conditions / Disorders (520)
- Medical Device (49)
- Medical news stories (431)
- Medical news stories, blogs and research (98)
- Medical specialists / consultants (3)
- Medical technologists (12)
- mental health (273)
- migraines (140)
- mindfulness (5)
- Miscellaneous & Other (5)
- Multiple Sclerosis (MS) (145)
- Muscular Symptom Atrophy (3)
- Musculoskeletal (308)
- NCCIH (1)
- Neuroendocrine (21)
- Neurology (33)
- Neuroscience (31)
- Newsletters (279)
- Newsletters/Papers/Magazines/Blogs (253)
- NHS (7)
- NICE ~ National Institute for Health and Care Excellence (3)
- NIH ( The National Institutes of Health ) US (10)
- NIHR (9)
- NIHR Clinical Research Network Patient & Public Involvement & Engagement Patient Research Ambassador Initiative (7)
- P.O.T.S (5)
- Pain management (37)
- Parkinsons (5)
- Patient Advocacy (361)
- patient centricity (19)
- Patient Engagement (22)
- Patients (459)
- Patients included (35)
- Pdf Download Available (16)
- Personality disorders (3)
- petitions & posters (3)
- pharma (230)
- Pharma (161)
- Pharma / Science / Tech / Digital / AI (246)
- pharmaphorum (4)
- physiotherapy (2)
- Places for relaxing & tranquil times – Relax & Recharge (86)
- Podcast (33)
- Poetry (5)
- POLLS (5)
- Product Reviews (68)
- Professionals (178)
- Psoriasis (8)
- public health (22)
- Rare (74)
- Rare Disease Advocacy (8)
- rare genetic disorder (6)
- re-blogs (101)
- Relaxation Techniques (95)
- Reproductive Health (10)
- Research (164)
- Researchers (16)
- Respiratory (6)
- Responsibility & Sustainability (2)
- Rheumatoid arthritis (92)
- Rheumatology (31)
- Scientists (17)
- Scoliosis (1)
- Self-Help Guide (8)
- Simply Symptoms (33)
- Sites to visit (183)
- Skin conditions (30)
- sleep disorder (6)
- Slideshows (7)
- Somatic Symptom Disorders (171)
- SoMe Platforms (38)
- Spoonie Talk (124)
- Stress (12)
- Suicide Prevention (4)
- Support Group (40)
- Supporters / Ambassadors (1)
- Survey (1)
- The CHILLOUT LOUNGE (93)
- The hints and tips station (187)
- Therapies and Treatments (148)
- Tinnitus (2)
- Twitter (4)
- Twitter Feed (72)
- Uncategorized (21)
- Video (76)
- video-casting / llive-stream (3)
- Webinar (42)
- WEGO HEALTH (16)
- Workplace and health (2)
- Youth matters (19)
- Zebra Strutters (3)
FibroFlutters Information that appears on our posts
This section shows you what information that is attached to our posts. It includes:
- Social links
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
- 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.
Social and useful links
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.
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