Category: chronic illness

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

Post author By fibrofly73
Post date November 14, 2021
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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.

Tags #notjustpatients., Advocacy, Carole Scrafton, chronic illness, collaboration, Drug development, event summary, Face to face meeting, multi stakeholders, Paradigm Global Events, patient centricity, Patient Engagement, patient voice, Patients, PFMD, rare disease, Research

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?

Post author By fibrofly73
Post date September 27, 2021
1 Comment on Patient Engagement Day with Prime Patient – Did you miss it?
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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.

Tags #AmplifyThePatientVoice, chronic illness, Drug development, invisible illness, Patient Engagement, Patient Engagement Day, Patient interviews, Patient partnerships, patient voice, Prime Global People, rare disease, Research

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

Post author By fibrofly73
Post date September 24, 2021
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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.

Tags #IAAD, #IAAD21, Ataxia UK, Brain, chronic illness, FUNdraising, Neurological Diseases, Patient Advocacy, Rare Disease Advocacy, Rare disease awareness, Rare neurological disease

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

Post author By fibrofly73
Post date September 19, 2021
1 Comment on 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…. … […]

Tags #chronicblog, #Patient, anxiety, chronic pain, EDS, fatigue, fibro, gastric health, Health care, HMS, IBS, JHS, Stress, Useful

Care givers Child health chronic illness Drug development FibroFlutters Health and medical Healthcare Join the Community medical Medical Conditions / Disorders Medical news stories, blogs and research Partnerships Patient Advocacy Patient Engagement Patients Product Reviews Rare Rare Disease Advocacy Research Survey Therapies and Treatments Twitter Feed

Voice your opinions to improve medical products and services

Post author By fibrofly73
Post date September 13, 2021
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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!

Tags caregivers, chronic illness, clinical, Disability, get paid for your experiences, Give feedback, Healthcare, invisible illness, medical & healthcare industry, patient experience, patient voice, Patients, rare diseases, Research, share your story, voice your opinion

#Innovation Awareness campaigns, events, blogs, petitions & posters Care givers Drug development EVENTS Health and medical Healthcare Industry & business matters Media Partners medical Medical Conditions / Disorders Medical news stories, blogs and research Patient Advocacy patient centricity Patient Engagement Patients pharma Professionals Rare Rare Disease Advocacy rare genetic disorder Researchers Scientists Supporters / Ambassadors Twitter Feed

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

Post author By fibrofly73
Post date September 12, 2021
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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.

Tags #RAREsummit21, Cambridge Rare Disease Network, chronic illness, Disability, Healthcare Professionals, invisible illness, medical & healthcare industry, Patient Advocacy, Patient Engagement, patient experience, patient voice, pharma, rare disease, Rare Disease Advocacy, Rare disease awareness, rare drug development, Research, virtual event

Awareness campaigns Awareness campaigns, events, blogs, petitions & posters chronic illness chronic pain FibroFlutters Fibromyalgia FMAUK Info site Join the Community Medical Conditions / Disorders Medical news stories, blogs and research Twitter Feed

Fibromyalgia Awareness Week 2021 – #BecomeFibroAware

Post author By fibrofly73
Post date September 5, 2021

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

Tags #BecomeFibroAware, Awareness Campaign, chronic illness, chronic pain, FibroFlutters, Fibromyalgia, Fibromyalgia Action Uk, Fibromyalgia Awareness Week 2021, health, Health Advocacy, health support groups, invisible illness, Sunderland Fibromyalgia Support Group, Support Group

Ataxia Awareness campaigns Awareness campaigns, events, blogs, petitions & posters Charities chronic illness Health and medical Healthcare Medical Conditions / Disorders Medical news stories, blogs and research Neurology Patient Advocacy Patients Rare Rare Disease Advocacy rare genetic disorder Supporters / Ambassadors Twitter Feed

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

Post author By fibrofly73
Post date August 31, 2021
1 Comment on International Ataxia Awareness Day 25th September with ‘Ataxia and Me’
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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.

Tags ataxia, Ataxia and Me, Disability, Disease Awareness, health, medical, Movement Disorder, Patient Advocacy, patient voice, rare disease, Rare Disease Advocacy, Rare disease awareness, Research, September

Awareness campaigns, events, blogs, petitions & posters Care givers chronic illness Join the Community Medical Conditions / Disorders Medical news stories, blogs and research Mens health mental health Patient Advocacy Patients Rare Rare Disease Advocacy

Rare Disease Male Support Group – mental health community support.

Post author By fibrofly73
Post date August 29, 2021
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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.

Tags Community Support, health support groups, male support network, Mens helth, mental health, mental health matters, Positive thinking, Rare disease event, Support Group, Time To Talk

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

Post author By fibrofly73
Post date August 17, 2021
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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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