#RAREsummit19 | 23 September in Cambridge | I’m going, will you join us?!

Will you be joining us in supporting #RAREsummit19 on 23 September in Cambridge.  A highlight on the rare disease calendar. Being an official media partner for this event is a great honour in the name of rare disease advocacy and I cannot wait to attend the event and be a part of the day’s activities. It would be great to see you there, whether you’re a patient advocate, healthcare professional, clinical researcher, or someone working in the field of pharma and patient engagement, or, driving forward the industry towards a patient-centric model / multidisciplinary model to increase patient outcomes overall in the world of rare disease. Patient-centricity is a subject very close to my heart, as it mirrors our dream of a multidisciplinary approach to medical healthcare here at FibroFlutters, regarding patients like myself and many of our members living with multiple conditions, and is something that I’ll always endeavour to support.

For me, the subject of increasing awareness of rare diseases is also very important as it took until I was 39 to get my diagnosis of Ehlers Danlos Syndrome. Aged 13, diagnosed with mild scoliosis and aged 19 I was diagnosed with Spina Bifida Occulta and the rare 6th vertebrae. Reducing the length of time for people to get diagnosed is something that we advocate for at FibroFlutters, and certainly hope that with the developing digital, and AI landscape, will begin to improve soon. Then you have to look at drug development and clinical trials, how to increase patient involvement and retaining them throughout the course of the trial. Clinical trials require researchers, academics, healthcare professionals, diagnosticians, lab-technicians, biomedical scientists medical technologists, geneticists, scientists and pharma, so bringing them altogether to work ‘with’ patients and not just ‘for’ patients has been a fantastic new development within the clinical trial landscape.

How to to improve patient engagement (PE)?

How to improve the education of PE, not just for those within clinical research but for all stakeholders involved.

My work with Patient Focused Medicines Development and The Synergist is my way of helping to improve the clinical trial landscape. A clever way for them to develop a new PE training set-up that has included patients in the whole design process, aiding them withmany other stakeholders from the onset. I have also been involved with FindMeCure too as a patient advisor to help them whilst they developed a new platform ‘FindMePatients’ for CRO’s to recruit patients. Another project that utilised the expertise and experience from patients to design new processes to help to improve the clinical trial process and PE, and patient retainment in the future, which for rare disease is a crucial necessity.


Brought to you by the Cambridge Rare Disease Network, RAREsummit19 is a 1 day interactive conference focusing on patient-centricity in rare disease progress.  The event will highlight exemplars of patients, patient advocacy groups and carers involvement in the development of drugs, healthcare and assistive technologies and will showcase companies and researchers who are demonstrating commitment to developing meaningful partnerships with patients.

Join us at the Wellcome Genome Campus Conference Centre: a hub of life-changing science. We think it’s the perfect venue to make progress for rare diseases. 

We are proud media partners of @camraredisease #RAREsummit19 a unique event bringing all #stakeholders together to share best practice and celebrate #PatientsAsPartners. Find out more and join the discussion #StrongerTogether

#RAREsummit19 is a 1 day summit focusing on #patientcentricity in #raredisease progress. Find out more and join the discussion celebrate #PatientsAsPartners and be #StrongerTogether

What if we were able to share information with the power to revolutionise the current rare disease landscape?

What if we could provide solutions to patients now, answering their pressing questions about their disease, care, and treatment?

What if we could ensure that patients and advocates played an equal and vital role in the development of drugs, assistive technologies, and healthcare?

Rare disease patients and their families are tired of waiting for answers and the slow pace of change. They want to be involved and share their lived experiences to help companies, researchers and healthcare professionals find answers and solutions.

Hear from,  learn from and engage in cross-sector activities with a range of stakeholders: patients; patient advocacy groups; researchers; health care professionals and companies who are leading the way in pioneering partnerships to accelerate change.

Join the Cambridge Rare Disease Network at the Wellcome Genome Campus: a hub of life-changing science. We think it’s the perfect venue to make progress for rare diseases.

You can sign up via this button link below


Author FibroFlutters Logo are proud to be actively supporting the work of AIMed Embracing #AI in #Healthcare #Medicine.

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FibroFlutters Information banner

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.
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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!!

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FibroFlutters ~ CHRONIC, INVISIBLE AND RARE ILLNESS SUPPORT / ADVICE / ADVOCACY| Disclaimer | Privacy Notes | 8 May 2018

FibroFlutters continuously

Advocating for a Multi-Disciplinary approach to all aspects of medical healthcare. With a model approach using all the ‘stakeholders’ I’m using 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 and be socially responsible for each other!!

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