About FibroFlutters

About FibroFlutters

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. carole@fibroflutters.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 Illness

Chronic Pain, Fibromyalgia, Arthritis and Musculoskeletal related Disorders

Mental Health

ME and Chronic Fatigue related Disorders

Undiagnosed / Undetermined

Rare Disease

Ehler’s Danlos Syndromes & Hypermobility Spectrum Disorders

Pigmented Villonodular Synovitis

Other rare musculoskeletal disorders



FibroFlutters

Advocating for a Multi-Disciplinary approach to all aspects of medical healthcare.

To help develop, nurture and help to create a multidisciplinary approach to all aspects of medical healthcare so that #chronicillness & #raredisease patients can receive the type of care and treatments that they need.


Raising Awareness

  • 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 process and research and 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 is 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 at some point in the future.

  • 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. Of course this 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, it must be noted that 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 everyone 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

  • 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!

Working together united within the industry we can develop a better way to communicate without confusing each other. It is not just patients that become lost in the translation and this is more than evident when at events that are attended by varying stakeholders. Cross-functional working is becoming a normality so being able to understand each other is an important step to develop and nurture. Using multi-disciplined approaches and networks can be of great help with that!


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

PLEASE NOTE

…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. We are mutual Trustees and Partnered Organisations

Alan is the Founder of Ataxia & Me. He is also co-editor for #chronicillnessVOICE and Ataxia / Rare Disease Advocate and Rare Disease Networker. We work closely with Alan and his organisation with mutual support, empathy and compassion. He is also a member of varying advisory boards and committees with a wealth of experience in creating better pathways for people with rare diseases. His advocacy work also includes encouraging people to get involved with research and for industry players to develop and implement better patient engagement practices. His slogan is “Talk to the patient not at the patient”.


“Ataxia is a Greek word meaning lack of order.

Our mission is to bring back some order to the lack of order”

Ataxia and Me

Registered Community Interest Organisation 1184030

Trustee, advisor and great friend Paul Simms joins us in a personal capacity. He is the former Chairman of eyeforpharma who is now working with his new company Impatient Health, which we do of course support.

Paul, “Pharma Provocateur”, has been great mentor for the last couple of years and has helped Carole to learn and understand the Pharma Industry. He has a strong passion for creating better healthcare all round for patients and loves to connect with them.

Known for producing provocative ‘bold predictions’ regarding the future direction of the pharmaceutical industry and inciting lively debate amongst executives.

Check out 2021 Predictions by Paul Simms via his company Impatient Health and interviewer Jessica Federer. Carole provided research from a patient perspective towards Pauls’ 2021 predictions.

https://impatient.health/content-2021-predictions.php

Cambridge Rare Disease Network

Cambridge Rare Disease Network (CRDN) 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.

We support CRDN, proud to be media partners, and show philanthropic character through regularly donating to their cause.

CRDN Registered Charity Number: 1166365
Company Number: 9798317


“CRDN collaborated with Medics 4 Rare Diseases and Rare Revolution Magazine to bring together a cross sector group of experts and advocates newly named ARDEnt (Action for Rare Disease Empowerment) to produce a report called “Future Proofing Rare Disease Care, Research, and Treatment.” 

https://www.camraredisease.org/ardent/

Read the report via our post


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.

Founder and CEO Christine Von Raesfeld is dedicated to breaking silo’s in healthcare as well as being a key influencer and connector…. yes, it is possible to be both!

We are empathetically connected and our mindsets regarding the healthcare industry are aligned. We are joined together through voice and conversations to help create and encourage the necessary changes to make healthcare better for all at International level. Christine is passionate about bringing a critically needed patient perspective to cutting edge medical innovations. Her work involves patient advocacy organizations, industry representatives, and individual patients and their loved ones. Christine has a genuine and true commitment to providing patients with chronic and rare diseases with the support they need.

In her spare time, Christine is interested in learning and spends most of her time researching ways we can incentivize Healthcare and reframe the way we look at medicine.

People with Empathy is a tax-exempt nonprofit organization under the Internal Revenue Code 501(c)(3) with EIN 85-0575922. Donations to People with Empathy are tax deductible to the fullest extent of the law.

Dazzle4Rare

Dazzle4Rare was established in July of 2016 with a simple goal of signal boosting rare and undiagnosed patient and community messages. Since that first August week long event, we have been working with allies, advocates, small and large non-profit organisations, and others who wish to elevate rare and undiagnosed voices. – https://www.dazzle4rare.net/

We are proud to partner with Kimberly Thomas-Tague and #Dazzle4Rare and join many other organisations to support this years campaign to raise awareness for Rare Diseases.

Want to know how to participate click the button >>>

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

Rare Advocacy Movement

The Rare Advocacy Movement (RAM) is the first community-based network of professionals dedicated to protecting the interests of the global community of people living with rare conditions and their carers.

“The Rare Advocacy Movement (RAM) is a novel rare disease community-based advocacy network designed to address the issues that affect the real world people of the rare disease community. RAM is the only community-based Center of Insight and Collaboration Zone offering rare disease stakeholders authentic, comprehensive real world insights, from the source.” – The Rare Advocacy Movement (RAM)

FindACure

Findacure is a charity that is bringing the rare disease community together. By providing free training to rare disease patient groups, we are helping them to grow and professionalise.

FibroFlutters have just completed a year on their Mentoring Scheme. We will continue to 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 our infrastructure before applying for status. As a result our Rare Disease Advocacy support arm ‘Zebra Strutters’ was created.

Findacure Registered Charity no: 1149646 | Company Registration: 8174973


The ED Society – Ectodermal Dysplasia

Rare Disease Charitable organisation run by my Findacure Mentor Diana Perry.

“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.”

The Ectodermal Dysplasia Society is a UK registered charity. Charity No. 1089135

Rare Revolution Magazine

A first of its kind, digital magazine giving a voice to those affected by RARE conditions and the charities that represent and support them.

Rare Revolution is published by NRG Collective, a not-for-profit media company specialising in rare disease content

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’.

Patient Focused Medicine Development

Integrating the voice of the PATIENT across the lifecycle of medicine


Patient Focused Medicines Development (PFMD) aims to transform the way in which we understand, engage, and partner with patients globally in the design and development of research and medicines by focusing on unmet patient needs. We are bringing together and synergizing disparate but complementary efforts that integrate the voice of the PATIENT across the lifecycle of medicine. PFMD was established in October 2015 as an open, independent global coalition of health stakeholders.

https://patientfocusedmedicine.org/about-pfmd/

The Synergist

We believe there is a growing need to collectively face societal issues by addressing broken and inefficient systems and accelerating societal (co-)impact.

https://www.thesynergist.org/about/

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. (partnership)

Antidote is on a mission to transform the way that sponsors and patients connect in order to accelerate medical research. To learn more, get in touch.

Jeeva Informatics

Jeeva for patients / Jeeva for researchers

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.

Inspire

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.”

Pain Concern Registered Charity no. SC023559.

“Working to improve the lives of people living with pain and those who care for them.”

We have been advocates for Pain Concern now for a long time and support the great work that they do for people living life with chronic pain. If you don’t know who they are please visit their site and check out their resources.

They also produce a series of podcasts called Airing Pain that have been going for quite some time and I encourage you to take tune in and take a listen.

There is also a magazine that you can subscribe to called Pain Matters.

Back Pain Blog / Blogger Bar

Other friends on wordpress yet to be added.

Inspired Ergonomics

Information to be added

Fibromyalgia Action UK

Information to be added

Sunderland Mind

Information to be added

Ehlers Danlos Support UK

Information to be added

Arthritis and Musculoskeletal Alliance (ARMA)

Information to be added

FindMeCure Foundation

Information to be added

EMJ

Information to be added

AIMED

‘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

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

MD Group International

Putting patients first
Digital and patient health services putting patients at the forefront of clinical trials

READ THE RECAP

mdWebinar Recap: How Can We Improve the Patient Experience in Clinical Trials?

mdWebinar 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

Envision Pharma Group

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.’

Reuters Events / Reuters Events Pharma (formerly eyeforpharma) / Reuters Events Sustainable Business (formerly Ethical Corp)

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

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

Carole Scrafton (#FibroFlutters), Natasha Ratcliffe (Parkinson’s UK), Dr Oleksandr Gorbenko (Ipsen), Oana BERNARD (Servier), and David Feldman (National Kidney Foundation)

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)

check out 2022

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

Categories

logos and info banner header link to home page

FibroFlutters

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

Advocating for a Multi-Disciplinary approach to all aspects of medical healthcare.

To help develop, nurture and help to create a multidisciplinary approach to all aspects of medical healthcare so that #chronicillness & #raredisease patients can receive the type of care and treatments that they need.

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.

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



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