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International Fibromyalgia Awareness Day – Happy 8th Birthday to FibroFlutters

It doesn’t matter where you live in the World when you are given your fibromyalgia diagnosis, one of the first things you want to know is where to get information that you can rely on.

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Redevelopment and rebranding underway at Flutters and Strutters

Our site is currently old and sporting some posts that need attention. We need to get rid of dead links and update everything. Redevelopment and rebranding is essential to us moving forwards.

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Real World Evidence Live: Rare Diseases & Innovative Therapies

Real-World Evidence 2022: Rare Diseases and Innovative Therapies will unite healthcare stakeholders to discuss and advance agile strategies for accelerating collaboration and patient focus in a post-COVID Europe.

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My experience – First face-to-face event in 2 years!

This week I was lucky enough to attend the ‘Patient Centricity and Collaboration Global Congress 2021, Europe, that was held in London on 8-9th November. By Paradigm Global Events, that was held in London on 8-9th November. The last time I attended such an event in person was in October 2019, in London. In this article I discuss it, my experience and share the messages that I took with me.

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Patient Engagement Day with Prime Patient – Did you miss it?

Patient Engagement Day with Prime Patient – Did you miss it?
UPDATED to include an article by Olivia Kersey, Patient Strategist, at PEP Talks, which outlines the highlights of the very first annual Patient Engagement Day.

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Rare neurological disease – Awareness campaign for AtaxiaUK #IAAD21

Taryn is delivering the Ataxia UKs medical guidelines to her GP in Sunderland for the campaign. Educating doctors is important to help this rare condition, ataxia, get recognised. Knowing about the disease can help people with symptoms to get noticed sooner… and diagnosed quicker.

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Patient Engagement With Patient Focused Medicine Development

The PFMD network is making sure to aggregate existing knowledge and tools, identifying good practices and coherently combining them before designing accessible and useful avenues for the various audiences that will use them.

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Clinician Series is back with a Fresh new format – AIMed

Starting on September 28 and 29, AIMed will go live with a weekly series of high quality content. Shorter, more focused sessions available to view for free live or on-demand.

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Irritable bowel syndrome (IBS) what is it? – video | Patient | Dr Sarah Jarvis

Do you have Irritable Bowel Syndrome (IBS)? Irritable Bowel Syndrome can be quite debilitating and many members of FibroFlutters have been diagnosed with it. To help people understand the condition better, and raise awareness, I share this video and information leaflet. The intense pain leaves me pacing and then writhing, and pacing and writhing…. … […]

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Precision Medicine Forum PATIENT WEEK – Change of date.

Precision Medicine Forum – Patient Week convenes healthcare professionals, researchers, industry, payers and patients/patient advocates in a unique setting which puts the patient front and centre of the discussions. This time around there will be panels sessions, roundtables, 1-2-1 networking and group networking sessions.