#chronicillnessVOICE June 21 – health, patients, medical, research, pharma related news for everyone #notjustpatients
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.
Please note that we are not medical professionals
Any information read or shared on, to, or from this website should not override any advice given to you by your own Doctors.
#chronicillnessVOICE #notjustpatients #chronicillness #patients #health #research #pharma #science #AI #digitalhealth #globalhealth #clinicalresearch #mentalhealth #rarediseases #mindfulness #lifestyle #medtech #healthIT #medicine #drugdevelopment #publichealth
PLEASE NOTE: Sharing items on this website and in our #chronicillnessVOICE daily newsletters does not necessarily mean endorsement, or necessarily reflect the views of myself, or our organisation. Unless stated posts are not sponsored, and this is produced for free and voluntarily.
#chronicillnessVOICE June 14 – NEWS
Editors pick of the days newsletters
‘Nobody is catching it’: Algorithms used in health care nationwide are rife with bias | STAT – Morning Rounds | 21 June 2021 | Health Tech
“I don’t know how bad this is yet, but I think we’re going to keep uncovering a bunch of cases where algorithms are biased and possibly doing harm,” one expert tells STAT’s Casey Ross.
MIKE REDDY FOR STAT
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Robot-assisted surgery: Putting the reality in virtual reality | Tech Xplore JUNE 21, 2021 / Robotics, Machine learning & AI
by Chinese Association of Automation
Excerpt: “Our result has indicated the use of robot with a simulation platform could potentially improve the general usability of intra-operative ultrasound and assist operators with less experience,” Wang said.
More information: Shuangyi Wang et al, Robotic Intra-Operative Ultrasound: Virtual Environments and Parallel Systems, IEEE/CAA Journal of Automatica Sinica (2021). DOI: 10.1109/JAS.2021.1003985
Sourced via: Technology news – Science X
Science X is a network of high-quality websites that provides the most complete and comprehensive daily coverage of science, technology, and medical news.
Irritable bowel syndrome endoscopically identifiable for the first time from mucosal biofilms JUNE 18, 2021 / Gastroenterology
by Medical University of Vienna
“One in six women and one in twelve men in Austria suffers from some form of IBS—therefore around one million people in all. Using currently available techniques, it is only possible to diagnose IBS by a process of elimination. Most people suffering from irritable bowel syndrome only go to their doctor when they have severe symptoms such as constipation, diarrhea, abdominal pain, or a change in bowel motion. Researchers from the Department of Medicine III of the Medical University of Vienna and the University of Vienna have now shown that, in most cases, IBS is associated with bacterial biofilms in the gut that are visible under endoscopic examination.”
More information: Maximilian Baumgartner et al, Mucosal biofilms are an endoscopic feature of irritable bowel syndrome and ulcerative colitis., Gastroenterology (2021). DOI: 10.1053/j.gastro.2021.06.024
Journal information: Gastroenterology
Trial results of new drug for generalized myasthenia gravis JUNE 18, 2021 / Medications, Neuroscience
by University of North Carolina at Chapel Hill School of Medicine
Argenx, a Belgium pharmaceutical company, recently announced that The Lancet Neurology has published pivotal trial results from the Phase 3 ADAPT trial of efgartigimod, an FcRn antagonist, for the treatment of adults living with generalized myasthenia gravis (gMG). Efgartigimod is currently under review with the U.S. Food and Drug Administration (FDA) for the treatment of gMG with a Prescription Drug User Fee Act (PDUFA) target action date of December 17, 2021, and if approved, would be the first-and-only approved FcRn antagonist.
More information: James F Howard et al, Safety, efficacy, and tolerability of efgartigimod in patients with generalised myasthenia gravis (ADAPT): a multicentre, randomised, placebo-controlled, phase 3 trial, The Lancet Neurology (2021). DOI: 10.1016/S1474-4422(21)00159-9
Journal information: Lancet Neurology
Sourced via Medicine and Health news – Science X
Science X is a network of high-quality websites that provides the most complete and comprehensive daily coverage of science, technology, and medical news.
A Bill to End the War on Drugs | Psychiatric Times | June 15, 2021
Posted by Leah Kuntz
The Drug Policy Reform Act, introduced today, intends to decriminalize drug use and possession, providing health-centered approaches and rehabilitation instead.
https://www.psychiatrictimes.com/view/a-bill-to-end-the-war-on-drugs
Psychiatric Times an MJH Life Sciences™ Brand
The Celiac Scene News – June 2021 | Ellen Bayens
A great resource for recipes, podcasts and articles that are appropriate for anyone with Celiac Disease and living a Gluten-free life. No matter where in the world that you live!
“The Celiac Scene™ is your premier resource for fabulous gluten-free living in Victoria, Vancouver Island & the Gulf Islands. Owned & operated by celiacs, we guide you to restaurants we trust and local gluten-free products we love! We even tell you where to purchase them, at the very best prices. Enjoy national ‘celiac’ news, local reviews and non-stop gluten-free event notices. The Celiac Scene is your gateway to Gluten-Free Paradise!”
Ellen Bayens – https://theceliacscene.com/
“My dad and husband are both GI’s and I have Crohn’s disease” | Lights Camera Crohns
Sourced through Feedspot, find out what it is here
Imagine having a dad who’s a gastroenterologist and a husband who is a GI fellow… and having Crohn’s disease. For 32-year-old, Lauren Gregory, that’s her reality. She was diagnosed with Crohn’s in 2008. Lauren is also a doctor herself and an IBD mom! When she’s not taking care of pediatric patients in the hospital, she’s […]
Eczema management plans: do they help control your eczema? Patient 11 May 2021 newsletter
Authored by Dr Sarah Jarvis MBE · Reviewed by Dr Colin Tidy
07-Apr-21
“Poorly controlled eczema can make you or your child feel miserable, generally unwell, grumpy and uncomfortable, even if you don’t have a flare-up. So it’s not surprising that we’re always hunting for something that will help relieve both flare-ups and day-to-day misery – and an eczema management plan could help do just that.”
Eczema management plans: do they help control your eczema? Patient 11 May 2021 newsletter
Disclaimer: This article is for information only and should not be used for the diagnosis or treatment of medical conditions. Egton Medical Information Systems Limited has used all reasonable care in compiling the information but make no warranty as to its accuracy. Consult a doctor or other health care professional for diagnosis and treatment of medical conditions
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Registered number: 10004395 / Registered office: Fulford Grange, Micklefield Lane, Rawdon, Leeds, LS19 6BA. Patient is a UK registered trade mark. https://patient.info/
Ymchwil Iechyd a Gofal Cymru bwletin / Health and Care Research Wales bulletin – Health and Care Research Wales – Fri, 18 Jun 2021
#chronicillnessVOICE June 21
Selection of posts by WordPress chronic bloggers that we support and follow
The 6 Es by Ronny Allan, Living with Neuroendocrine Cancer, June 17, 2021
When I first heard of something called “The 5 Es”, it struck me that I was aware of these issues and their potential effects; and I’m certain there is science to substantiate most of the content. These 5 E’s are apparently the most common ‘triggers’ for Carcinoid Syndrome.
Opening lines: The 6 Es by Ronny Allan, Living with Neuroendocrine Cancer, June 17, 2021
What #YouAreNotAlone Means to Me… By My life as a Rare Disease patient JUNE 15, 2021
My Experience With A Companion | by My Rockin Disabled Life June 14, 2021
I’m so tired … By Abigail Johnston, No Half Measures June 15, 2021
… it’s a tiring to be a forever patient, handle all that comes with the diagnosis and the treatment, learn about all of the things that I need to know and understand to make good decisions, advocate for myself and others, be a mom and wife and friend.
Opening lines: I’m so tired … By Abigail Johnston, No Half Measures June 15, 2021
Why Hasn’t Receiving a Diagnosis Changed My Doctor’s Opinion on My Health? By Me, Myself and Chronic Illness Blog, June 18, 2021
CRYSTAL HEALING FOR BETTER HEALTH… By BACK PAIN BLOG UK…, June 10, 2021
Details Behind the Body’s Response to Stress Revealed | Neuroscience News June 19, 2021
Source: McLean Hospital
Study reveals how key proteins regulate the brain’s response to stress in the hippocampus.
New research now details the interplay between proteins involved in controlling the body’s stress response and points to potential therapeutic targets when this response goes awry. The study, which was conducted by an international team led by investigators at McLean Hospital, appears in the journal Cell Reports.
Excerpt: Details Behind the Body’s Response to Stress Revealed | Neuroscience News June 19, 2021
Original Research: The findings will appear in Cell Reports
Sign up for their FREE newsletters and get the latest neuroscience headlines and summaries sent to your email once a day, totally free. delivered direct to your inbox.
Rare Neurology/Nervous System Diseases – Check Rare
A selection of articles about varying Congenital and Genetic Conditions
https://checkrare.com/diseases/neurology-nervous-system-diseases/
Lung Diseases – Check Rare
A selection of articles about varying Rare Lung Diseases
https://checkrare.com/diseases/lung-diseases/
Keep up to date with Rare Disease and sign up for Check Rare newsletters
Research Reveals the Cause Behind Misophonia | Patient Worthy June 1, 2021
Misophonia, which literally translates to hatred of sound, is a rare condition that causes affected individuals to have severe emotional reactions to common sounds, such as chewing or tapping.
Kendall Mason – Patient Worthy – opening lines – Research Reveals the Cause Behind Misophonia
EMJ
Explore our dedicated COVID-19 pages
Out Now: New Issue of EMJ Radiology
An open-access eJournal that provides healthcare professionals with peer-reviewed articles written by experts, exclusive interviews, and highlights from the European Congress of Radiology (ECR) 2021. These are accompanied by abstract summaries of presentations from the congress.
DAILY UPDATE on COVID-19 via EMJ > European Medical Journal on paper.li
EMJ reviews all of the breaking news from the major healthcare congresses across Europe and North- America. Subscribe for updates
NEW ISSUE OF GOLD OUT NOW!
Subscription is required
Biotech founder placed on leave as $400M Alzheimer’s startup idea comes under scrutiny | Endpoints News – June 18, 2021
Jason Mast – Editor
“Athira Pharma, the Alzheimer’s biotech that emerged out of obscurity last year and raised nearly $400 million for a dark-horse approach to treating neurodegeneration, has found itself in sudden turmoil.”
OPENING PARAGRAPH: Biotech founder placed on leave as $400M Alzheimer’s startup idea comes under scrutiny | Endpoints News – June 18, 2021
Sourced via: John Carroll — Endpoints News | Subscription may be required
Endpoints News
Essential biopharma news and analysis
Independent journalism since 2016
#chronicillnessVOICE June 21
Health, Medical, Research, Patient and Pharma related newsletters
A selection of self-updating Health, Medical, Research, Patient and Pharma related paperli newsletters for everyone #notjustpatients. Addressing issues regarding health and medical wellbeing, chronic and rare diseases, clinical research, pharma industry and drug development.
The above post includes a link to our very own The #chronicillnessVOICE Daily newsletter for everyone #notjustpatients paper.li
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EVENTS & WEBINARS
EPF Congress 2021 – Registration Now Open!
Developed by and for patients, the #EPFCongress2021 will focus on the digital transformation of healthcare. Join us from 26-29 October to explore the added value of patient partnerships in the field of digital health. Register today>>>
European Patients’ Forum (EPF)
Discover EPF’s Mission, Vision and Strategic Goals
The New Value Equation: Unify Data with Patient Engagement to Improve Patient (and Business) Outcomes
June 24, 2021·10.30am New York / 3.30pm London / 4.30pm Paris
FREE webinar
Panelists:
Scott Williams, Head, Global Public Affairs, Rare Diseases
Anne Najjar, Former Global Head, Patient Experience, AbbVie
Denise Palermo, Managing Director, Intelligent Patient Solutions, Accenture Life Sciences
Sarah Krug, Founder & CEO, Health Collaboratory
Moderator: Paul Simms, Impatient Health
Understanding patients’ continuously evolving expectations and desires is more critical than ever in our new reality: learn how blending qualitative and quantitative patient data drives better patient experiences and outcomes—and how that translates to business success.
Impatient Health – Paul Simms
“We are Im-patient”
Making the Unseen Seen ARDEnt Report – CRDN EVENT
If you missed> MAKING THE UNSEEN SEEN: Rare Disease and the impact of the COVID19 pandemic.
Event by Cambridge Rare Disease Network (CRDN) and Niemann-Pick UK (NPUK)
You can access the recording below
- Please find the webinar recording here
- The presentation slides from the webinar here
- The full ‘Making the Unseen Seen’ report for download here
“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.”
Organiser of Making the Unseen Seen ARDEnt Report
#impactofcovid19 #rarediseases #empowerment #healthcare #report #raredisease #rare2021
At Home Superheroes powered by Marvel
Introducing… Superheroes on Vacation!
“super-fun and flexible, month-long challenge….”
https://superheroseries.co.uk/at-home-superheroes
Calling all Superheroes & Sidekicks!
There is only 1 month to go until At Home Superheroes so grab your bucket, spades, capes & mask as we are heading on (virtual) vacation!
As entries are flying in, the booking system officially closes in 2 weeks so if you want to flex your superpowers and take a tour to some of the world’s most sought after travel destinations, then sign up HERE now!
Don’t forget, our Charity Friends still have some places to spare, so get in touch with them if you want a free place/ want to fundraise for them!
Patient Engagement Open Forum 2021 – June sessions
What is the Patient Engagement Open Forum?
The Forum aims to facilitate collaboration and co-creation of real solutions for patients WITH patients while providing a holistic perspective of patient engagement, its landscape, and actors. Over the last years, it has become THE place for the patient engagement community to foster innovation, network, share practices, build trust, acceptance, and awareness.
Agenda
June 23, 2021: Day 1
14:30-16:30 CET: Understandings, Learnings, Guidances: What do we know so far on the use of Patient Experience Data for healthcare decision-making?
16:30-18:00 CET: Taking action to engage paediatric and young patients in medicines R&D
June 24, 2021: Day 2
14:30-16:00 CET: Navigating Digital Health: Shaping Guiding Principles for a Responsible Data Model
16:30-18:00 CET: Diversity, Inclusion and Equity in Patient Engagement
Got an event, or webinar, you want to share send us an email with ‘please share this event’ in the subject line!
#chronicillnessVOICE June 14
Raise your #chronicillnessVOICE
Campaigns
Charitable Radio
Please listen in online or by saying ‘enable Charitable Radio’ to your Alexa smart speaker, and please get involved – we want to help fundraising and celebrate the great work of volunteers, supporters and charity people. We aim to be the soundtrack to support great causes.
Our launch partners are JustGiving, who are sponsoring #FundraisingFridays, and Virgin Money Giving who are bringing us Brighter Morning in every weekday breakfast show and also offering two prize places for the 2021 London Marathon to lucky charity supporters.
We’ll feature great music from the 70’s up to now, charity shout outs, interviews, fun presenters, fundraising campaigns, thank you messages, national news and weather and our ‘GoodNews News’.
The social enterprise team at Charitable Radio invite you to get involved.
Visit CONTACT US to share your news or book an interview, talk partnership or message the studio.
We are part of a family of social enterprises that work to help the charity sector. Fundraising through travel and shopping and delivering amazing podcast creation and PR services. To find out more please visit The Charitable Group.
Breathe Easy Week – From 21 – 27 June
Join us for Love your lungs week this June, to raise awareness of lung health.
British Lung Foundation
How you can help:
- Spread the word
- Take Steps in June
- Join the fight for clean air
Follow this link to learn more:
https://www.blf.org.uk/take-action/campaign/loveyourlungsweek
Asthma UK and British Lung Foundation Partnership is a company limited by guarantee 01863614 (England and Wales).
VAT number 648 8121 18. Registered charity in England and Wales (326730), Scotland (SC038415) and the Isle of Man (1177).
Sands Awareness Month 2021: Always There campaign
SANDS (Stillbirth and neonatal death charity) Awareness Month 2021 is in June, and is an annual event run by SANDS (Stillbirth and neonatal death charity), to raise awareness of the facts and impacts relating to neonatal deaths and stillbirths. The loss of a child in pregnancy or childbirth affects parents for life, but the wider public are not always aware of the full impact of such a tragedy.
Check out their Always There campaign
2021 Sands (Stillbirth and Neonatal Death Charity)
Charity registration number 299679. Company Limited by Guarantee Number 2212082 • Scottish Charity Registration Number SC042789 • We also operate in Northern Ireland
Registered address: CAN Mezzanine, 49-51 East Road, London, N1 6AH
World Continence Week 2021
World Continence Week (WCW) is a health campaign run by the World Federation For Incontinence and Pelvic Problems (WFIPP) to raise awareness of incontinence related issues.
This year it takes place from the 21 – 27 June and during the week the WFIPP highlights the impact urinary incontinence can have on our life and encourages those living with it to seek help so they no longer have to suffer in silence.
Check out and register for their awareness event
Learn more by visiting the website https://wfipp.org/
Add your story to The Disability Account | Scope
“By adding your story, you’ll join others doing the same. The Scope campaigns team will put these together into The Disability Account. They will share this powerful account of real-life stories with Department for Work Pensions. This will help the Government understand the financial pressures disabled people face, and make change happen.”
Ehlers-Danlos Awareness
Ehlers-Danlos Syndromes
Regarding Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (HSD’s) we have been providing information and support for a few years now. The difference now is that it is more noticeable that we do. This section for Rare Disease has been a long time in the planning and now EDS has a proper home on FibroFlutters website.
As an organisation FibroFlutters & ZebraStrutters support Ehlers Danlos Support UK (EDS UK) and Ehlers Danlos Society, and the Hypermobility Association (HMSA). Our doors are open to all. We are interested to hear your stories and are willing to share them here for you. You might have interesting articles and research that you think we should have on the site. When you have awareness campaigns or upcoming events we are also happy to help circulate them across our network.
If you are interested in contributing, or have something to share please contact Carole via the button below.
Also, if you would like us to source some information for you please just ask. We can never promise, but we will always try!
Got an advocacy campaign, or petition, you want to share send us an email with ‘please share this campaign’ in the subject line!
THANK YOU FOR READING #chronicillnessVOICE June 21, YOUR SUPPORT IS GREATLY APPRECIATED
FibroFlutters
We are a Patient Advocacy Organisation & online social media communications network. Our services are for people affected by chronic illnesses and rare disease. This includes care providers, health professionals and those within the medical healthcare related industries. #notjustpatients
We advocate for better services for patients and their care-givers, improve patient outcomes. This includes supporting the areas of medical healthcare industry that are creating those changes. Multi-stakeholder approaches to create better healthcare for everyone involved #notjustpatients.
Advocating for a Multi-Disciplinary approach to all aspects of medical healthcare.
To help develop, nurture and help to create a multidisciplinary approach to all aspects of medical healthcare so that #chronicillness & #raredisease patients can receive the type of care and treatments that they need.
The work we do involves disease awareness, health awareness, and, helping to point people in the direction of where to get legitimate health communications and information. As well as this we attend events and use patient voice to get important messages to help create better systems and processes for patients.
We aim to provide relevant health information from respected and reputed resources to those who request it. Our goal is to ensure that they are educating themselves from proper places. Pursuing our wish to provide support and advice to those with chronic and rare conditions
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