Categories
Awareness campaigns, events, blogs, petitions & posters EVENTS Health and medical Media Partners Medical Conditions / Disorders Medical news stories, blogs and research Patient Advocacy Patients Rare Rare Disease Advocacy Researchers Scientists Zebra Strutters

RAREfest22 – At the forefront of this event are the patients themselves!

RAREfest22 is the world’s only rare disease-inspired festival attracting an audience of stakeholders alongside the public. Festival-goers listen to expert talks, watch films, interact with around 25 exhibits, hear powerful patient stories and mingle with those taking part and others attending.

Categories
Awareness campaigns chronic pain FibroFlutters Fibromyalgia Info site MAY 12TH Medical Conditions / Disorders Medical news stories, blogs and research Patient Advocacy

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.

Categories
FibroFlutters FibroFlutters Milestone Miscellaneous & Other Uncategorized Zebra Strutters

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.

Categories
EVENTS Healthcare Media Partners Medical news stories, blogs and research Patient Engagement pharma Pharma / Science / Tech / Digital / AI

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.

Categories
#Innovation chronic illness conference Disability Drug development EVENTS FibroFlutters Health and medical Healthcare Industry & business matters medical Medical news stories, blogs and research Patient Advocacy patient centricity Patient Engagement Patients pharma Pharma / Science / Tech / Digital / AI Professionals Rare Disease Advocacy Research

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.

Categories
Awareness campaigns, events, blogs, petitions & posters chronic illness EVENTS Health and medical Healthcare Industry & business matters medical Partnerships Patient Advocacy patient centricity Patient Engagement Patients pharma Pharma / Science / Tech / Digital / AI Rare Twitter Feed Webinar

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.

Categories
Ataxia Awareness campaigns Awareness campaigns, events, blogs, petitions & posters Charities chronic illness Medical Conditions / Disorders Medical news stories, blogs and research Neuroscience Patient Advocacy Rare

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.

Categories
Awareness campaigns clinical trials Drug development Educational patient centricity Patient Engagement pharma Research Sites to visit

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.

Categories
#Innovation AI in medicine clinician series Clinician Series clinicians Educational EVENTS Health and medical medical Medical news stories, blogs and research Pharma / Science / Tech / Digital / AI Professionals Webinar

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.

Categories
chronic illness chronic pain Fibro MeCFS online NEWS & INFO sources Info site invisible illness Irritable Bowel Syndrome (IBS) Medical news stories Simply Symptoms Sites to visit

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…. … […]