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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

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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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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.

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Voice your opinions to improve medical products and services

Rare Patient Voice connects patients and family caregivers with confidential research studies and surveys. Their studies and surveys are opinion based and are all about the patients and caregivers experience to help improve treatments, products, and services.

Get paid to Voice your opinions. Help companies develop better products and services to help provide better healthcare for patients. Create better patient outcomes!

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RARE Summit 21 – it’s more than an event – it’s where the magic happens!

We're supporting RAREsummit21 #StrongerTogether

RAREsummit is more than an event – it’s where the magic happens.  A powerful movement for change that provides the right ingredients and ecosystem for a better future, where productive collaborations are nurtured and flourish for real patient impact.

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Fibromyalgia Awareness Week 2021 – #BecomeFibroAware

Unfortunately, there is no one-size fits all solution to the management of fibromyalgia.

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International Ataxia Awareness Day 25th September with ‘Ataxia and Me’

The word ‘ataxia’ comes from the Greek ‘a taxis’, which means ‘without order’.
          Our mission is to bring back some of the order to the lack of order
It is the term used for a group of neurodegenerative diseases that affect balance and coordination.

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Rare Disease Male Support Group – mental health community support.

Great opportunity to get together with other guys that have rare diseases and mental health issues.
Meet in a safe space, talk about what you are going through and offer support to each other if and where needed.

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#chronicillnessVOICE Aug 17 health, medical, pharma and research news

Bringing a varied selection of health news, medical news, pharma news, research news to you in relation to many aspects within the healthcare, medical healthcare & pharmaceutical landscapes.

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chronic illness chronic pain Collagen disorder EDS Health and medical Medical Conditions / Disorders Medical news stories Medical news stories, blogs and research Musculoskeletal Research Sites to visit

Do you have constant pain? This article may interest you!

Constant pain means you need a program or protocol to treat your basic injury or disease. One that reduces electric impulses and helps rebuild the damage to the NTRS in your spinal cord and brain. Symptomatic pain relievers are usually a must, but they don’t treat or reverse your basic problem.

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Industry & business matters Responsibility & Sustainability

Responsible Business Awards | Reuters Events – Have you entered yet?

Have you entered yet for The Responsible Business Awards by Reuters Events? There is less than 1 week to go until the deadline on 30th July

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We’re off mobilising for charity – 1 month long Superhero Series challenge

Using my rollator with its seat for those appropriately paced stops we hope to get out of the back lane this time. Last year the pandemic put restrictions on how I could complete the challenge.

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Medical news stories, blogs and research

#chronicillnessVOICE June 14 health, medical, pharma and research news

Bringing a varied selection of health news, medical news, pharma news, research news to you in relation to many aspects within the healthcare, medical healthcare & pharmaceutical landscapes.

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AI in radiology – AI-enabled opportunistic screening in medical imaging

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Join this exclusive webinar – Discussing the impact of AI-enabled opportunistic screening in medical imaging and how this can positively impact on population health at scale.

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ARDEnt Report – Rare Disease and the impact of the COVID19 pandemic.

“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.” 

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#chronicillnessVOICE May 11 health, medical, pharma and research news

#chronicillnessVOICE May 11 – health, patients, medical, research, pharma related news for everyone #notjustpatients #chronicillnessVOICE May 11: Bringing a varied selection of health news, medical news, pharma news, research news to you in relation to many aspects within the healthcare, medical healthcare & pharmaceutical landscapes. #chronicillnessVOICE #notjustpatients #chronicillness #patients #health #research #pharma #science #AI #digitalhealth […]

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#chronicillnessVOICE May 7 health, medical, pharma and research news

#chronicillnessVOICE May 7 – health, patients, medical, research, pharma related news for everyone #notjustpatients #chronicillnessVOICE May 7: Bringing a varied selection of health news, medical news, pharma news, research news to you in relation to many aspects within the healthcare, medical healthcare & pharmaceutical landscapes. #chronicillnessVOICE #notjustpatients #chronicillness #patients #health #research #pharma #science #AI #digitalhealth […]

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About FibroFlutters

Read this to learn about FibroFlutters, who we are today. A Patient Advocacy Organisation & online social media communications network for everyone #notjustpatients

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#chronicillnessVOICE April 26 health, medical, pharma and research news

Bringing a varied selection of health news, medical news, pharma news, research news to you in relation to many aspects within the healthcare, medical healthcare & pharmaceutical landscapes.

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AI in medicine Alternative / Complementary Therapies & Treatments Articles Awareness campaigns, events, blogs, petitions & posters Blogs / Bloggers Care givers chronic illness Deep learning Digital Health Disability Drug development EVENTS Fibro MeCFS online NEWS & INFO sources FibroFlutters genetics Global resources Health and medical Healthcare Industry & business matters Info site Machine learning medical Medical Conditions / Disorders Medical news stories Medical news stories, blogs and research Neuroscience Newsletters Newsletters/Papers/Magazines/Blogs Patient Advocacy Patients pharma Pharma / Science / Tech / Digital / AI Professionals public health Rare Rare Disease Advocacy rare genetic disorder Research Researchers Scientists Webinar

#chronicillnessVOICE April 20 health, medical, pharma and research news

Bringing a varied selection of health news, medical news, pharma news, research news to you in relation to many aspects within the healthcare, medical healthcare & pharmaceutical landscapes.

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Articles Awareness campaigns, events, blogs, petitions & posters chronic illness EVENTS Health and medical Media Medical Conditions / Disorders Medical news stories, blogs and research Newsletters/Papers/Magazines/Blogs Patient Advocacy Patients Pharma / Science / Tech / Digital / AI Professionals Rare Disease Advocacy Sites to visit

#chronicillnessVOICE April 19 health, medical, pharma and research news

Bringing a varied selection of health news, medical news, pharma news, research news to you in relation to many aspects within the healthcare, medical healthcare & pharmaceutical landscapes.

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Ehlers Danlos Syndrome resources. Where to find information and support.

Ehlers-Danlos Syndrome Awareness There are many members and supporters of FibroFlutters who have Ehlers-Danlos Syndrome (EDS), or Hypermobility Spectrum Disorders (HSDs). Including myself and fellow co-founder Vicky Green who has been officially diagnosed with Hypermobility Type EDS (hEDS). Raising awareness of Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders is part of our advocacy. In our earlier […]

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Health, Medical, Research, Patient and Pharma related newsletters

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These newsletters update themselves so please remember to check in, and / or remember to opt-in for the newsletters via the links provided.

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Top 10 Self-Help Tips for Back Pain and Fibromyalgia Sufferers | Nichola Adams, Health Ergonomist

To mark national Back Care Awareness Week (October 5-9), Nichola, a Technical Member of The Chartered Institute of Ergonomics and Human Factors, has compiled her ‘Top 10 Self-Help Tips for Back Pain and Fibromyalgia Sufferers’.

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Are you aware of this #Rare? Today is International Ataxia Awareness Day.

International Ataxia Awareness Day (IAAD) is on September 25 of each year. It is a coordinated effort from individuals and Ataxia organisations around the world to help shed light on this rare disease. #IAAD

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Are you aware of this #Rare? | Wolfram Syndrome UK Virtual Conference 2020 | 19th and 26th September

Wolfram Syndrome is a rare genetic disorder which is also known as DIDMOAD syndrome after its four most common features: Diabetes Insipidus, Diabetes Mellitus, Optic Atrophy and Deafness

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Pharma / Science / Tech / Digital / AI – Categories listing

Categories listing – Pharma / Science / Tech / Digital / AI

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Pigmented Villonodular Synovitis (PVNS) our Co-Founder’s patient experience with ultra rare disease. #dazzle4rare2020

After having constant dislocations in my knee where the PVNS tumour was removed from 6 years years previously had caused major damage. This was worsened with my hEDS which effects all of my joints.

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Where can you find Fibromyalgia and Chronic Pain resources across the Globe? Find out here!

Chronic Pain management can be a really difficult thing to master, please don’t give up as it can take time, perseverance and a lot of positive attitude until you find your balance with it.

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Exclusive Interview: Health Ergonomics – Health Professional explains what it is and then talks about how #covid19 pivoted her into tele-consulting.

Do you have back problems? Arthritis or Fibromyalgia, other problems with joint pain and stiffness?? Then how you are sitting at your desk in the office could be making it worse, whether you work at home or in a company environment. Read on to find out why, and how! This article comes as the result […]

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Sweet potato and spinach chilli recipe | Patient

A flavoursome creamy chilli that is not too hot and which the whole family will love

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My favourite Health Medical Research Patient & Pharma related Paper.Li newsletters for everyone #notjustpatients | Self-Updating

Bringing a varied selection of #healthnews #medicalnews #pharmanews #researchnews to you in relation to many aspects within the #healthcare #medicalhealthcare & #pharmaceutical landscapes.

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Cannacares CBD gel capsules Product Review – (sponsored)

It was easy to notice the fact my mobility wasn’t as stiff; pain was lesser than usual, and I wasn’t getting numbness with pins and needles as much in my hands and feet.

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healtheo360 Join a ‘PATIENT’ community and share your story!

healtheo360 is a community where patients can connect with one another for support, inspiration, and motivation.

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Freshly updated Selected Newsletters from News Medical

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Please note that medical information found on this website is designed to support, not to replace the relationship between patient and physician/doctor and the medical advice they may provide.

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'OIL' have you know! Alternative / Complementary Therapies & Treatments Aromatherapy chronic illness Medical Conditions / Disorders mindfulness The CHILLOUT LOUNGE Therapies and Treatments

How to Get Started with Essential Oils – Pink Fortitude, LLC

Whether you are curious about essential oils, skeptical about essential oils, or frequently use essential oils, this is the perfect guide to help you get started and teach you about the basics.

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‘What Patients Want’ Executive Round table Summary – eyeforpharma Patient Summit October 2019

This EXCLUSIVE PAPER ‘What Patients Want’ discusses the roundtables / interactive sessions that were designed + led by patients, co-chaired by patients, and moderated by industry facilitators ie patient advocates.

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Today is #RareDiseaseDay – Read my Patient Experience: Living with multiple rare diseases | Pharmafile | What’s your #Rare? care to share?

Not everyone with EDS has hypermobility, and not everyone with hypermobility has EDS!

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Guest content: Managing Diabetes: How Technology Can Help

‘…The Dario LC Blood Glucose Management System features a lancing device, glucose meter, smartphone app, and Bluetooth connectivity to allow you to easily analyze readings, spot trends, and share results.’

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Guest content: Diabetes resources by Dana Brown from Health Conditions resource website.

Photo by Pixabay on Pexels.com

Check out these resources provided to us by Dana Brown from healthconditions.info who kindly helped me to add new listings for our readers looking for information and articles related to Diabetes. A kind offering, and hopefully a great new resource relationship! Here is what she recommends: Resources to Empower Our Loved Ones Living with Diabetes […]

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Reflecting back! My year of patient, health, research and pharma advocacy 2019 | Carole Scrafton

In all honesty I am amazed that I have done all this especially considering my health was quite bad last year. I do tend to distract myself as much as possible, but crikey, I got around quite a bit didn’t I. – closing thoughts

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Bursitis and Osteoarthritis Similarities and Differences | News Medical | By Tim Boughton, M.Sc.

Knowing the differences between conditions that share so many symptom similarities makes it easier to understand the condition that you have, and also means you can work with your health care providers to create the most suitable management plan for you to cope living with it.

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10 Amazing Health Benefits Of Green Tea | DIY Health Remedy

10 Amazing Health Benefits Of Green Tea | DIY Health Remedy. DIY Health Remedy Home page For those of you who know me, you know that I love my green tea. When we have debilitating illnesses like Fibromyalgia that means we are not as mobile as before, things like Green tea can be a useful […]

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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…. … […]