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.… Read More RAREfest22 – At the forefront of this event are the patients themselves!
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.… Read More International Fibromyalgia Awareness Day – Happy 8th Birthday to FibroFlutters
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.… Read More Redevelopment and rebranding underway at Flutters and Strutters
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.… Read More My experience – First face-to-face event in 2 years!
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.… Read More Patient Engagement Day with Prime Patient – Did you miss it?
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.… Read More Rare neurological disease – Awareness campaign for AtaxiaUK #IAAD21
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.… Read More Patient Engagement With Patient Focused Medicine Development
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.… Read More Clinician Series is back with a Fresh new format – AIMed
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.… Read More Precision Medicine Forum PATIENT WEEK – Change of date.
Get paid to Voice your opinions. Help companies develop better products and services to help provide better healthcare for patients. Create better patient outcomes!… Read More Voice your opinions to improve medical products and services
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.… Read More RARE Summit 21 – it’s more than an event – it’s where the magic happens!
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.… Read More International Ataxia Awareness Day 25th September with ‘Ataxia and Me’
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.… Read More Rare Disease Male Support Group – mental health community support.
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.… Read More #chronicillnessVOICE Aug 17 health, medical, pharma and research news
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. … Read More Do you have constant pain? This article may interest you!
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… Read More Responsible Business Awards | Reuters Events – Have you entered yet?
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.… Read More We’re off mobilising for charity – 1 month long Superhero Series challenge
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.… Read More #chronicillnessVOICE June 14 health, medical, pharma and research news
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.… Read More AI in radiology – AI-enabled opportunistic screening in medical imaging
“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.” … Read More ARDEnt Report – Rare Disease and the impact of the COVID19 pandemic.
#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… Read More #chronicillnessVOICE May 11 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… Read More #chronicillnessVOICE May 7 health, medical, pharma and research news
Read this to learn about FibroFlutters, who we are today. A Patient Advocacy Organisation & online social media communications network for everyone #notjustpatients… Read More About FibroFlutters
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.… Read More #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.… Read More #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.… Read More #chronicillnessVOICE April 19 health, medical, pharma and research news
Raising awareness of Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders… Read More Ehlers Danlos Syndrome resources. Where to find information and support.
These newsletters update themselves so please remember to check in, and / or remember to opt-in for the newsletters via the links provided. … Read More Health, Medical, Research, Patient and Pharma related newsletters
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’.… Read More Top 10 Self-Help Tips for Back Pain and Fibromyalgia Sufferers | Nichola Adams, Health Ergonomist
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… Read More Are you aware of this #Rare? Today is International Ataxia Awareness Day.
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… Read More Are you aware of this #Rare? | Wolfram Syndrome UK Virtual Conference 2020 | 19th and 26th September
Categories listing – Pharma / Science / Tech / Digital / AI… Read More Pharma / Science / Tech / Digital / AI – Categories listing
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. … Read More Pigmented Villonodular Synovitis (PVNS) our Co-Founder’s patient experience with ultra rare disease. #dazzle4rare2020
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.… Read More Where can you find Fibromyalgia and Chronic Pain resources across the Globe? Find out here!
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… Read More Exclusive Interview: Health Ergonomics – Health Professional explains what it is and then talks about how #covid19 pivoted her into tele-consulting.
A flavoursome creamy chilli that is not too hot and which the whole family will love… Read More Sweet potato and spinach chilli recipe | Patient
Bringing a varied selection of #healthnews #medicalnews #pharmanews #researchnews to you in relation to many aspects within the #healthcare #medicalhealthcare & #pharmaceutical landscapes. … Read More My favourite Health Medical Research Patient & Pharma related Paper.Li newsletters for everyone #notjustpatients | Self-Updating
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. … Read More Cannacares CBD gel capsules Product Review – (sponsored)
healtheo360 is a community where patients can connect with one another for support, inspiration, and motivation.… Read More healtheo360 Join a ‘PATIENT’ community and share your story!
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.… Read More Freshly updated Selected Newsletters from News Medical
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.… Read More How to Get Started with Essential Oils – Pink Fortitude, LLC
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.… Read More ‘What Patients Want’ Executive Round table Summary – eyeforpharma Patient Summit October 2019
Not everyone with EDS has hypermobility, and not everyone with hypermobility has EDS!… Read More Today is #RareDiseaseDay – Read my Patient Experience: Living with multiple rare diseases | Pharmafile | What’s your #Rare? care to share?
‘…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.’… Read More Guest content: Managing Diabetes: How Technology Can Help
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… Read More Guest content: Diabetes resources by Dana Brown from Health Conditions resource website.
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… Read More Reflecting back! My year of patient, health, research and pharma advocacy 2019 | Carole Scrafton
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.… Read More Bursitis and Osteoarthritis Similarities and Differences | News Medical | By Tim Boughton, M.Sc.
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… Read More 10 Amazing Health Benefits Of Green Tea | DIY Health Remedy
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.… Read More Real World Evidence Live: Rare Diseases & Innovative Therapies
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…. …… Read More Irritable bowel syndrome (IBS) what is it? – video | Patient | Dr Sarah Jarvis