#chronicillnessVOICE June 1 health, medical, pharma and research news

#chronicillnessVOICE June 1 – 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 1 – NEWS

Editors pick of the days newsletters


New data collection service could ‘destroy’ patient trust | Digital Health Hannah Crouch 27 May 2021 | AI AND ANALYTICS

A proposed new data collection service designed to give planners and researchers faster access to patient information could “potentially destroy” trust in the NHS.

https://www.digitalhealth.net/2021/05/data-collection-service-destroy-patient-trust/

Independent news, intelligence, events and leadership networks on health IT

Digital Health provides independent business, policy and technology news, research and events focused on developments in health IT in the NHS and UK health.  Our coverage is focused, original and authoritative.  Over 20,000 readers subscribe to Digital Health’s newsletters.

About Digital Health Intelligence Limited


What’s Holding Back the Always Connected Wearable Health Sensors We Need? | John Lynn | Healthcare IT Today May 26, 2021

“Anyone who’s had experienced with bluetooth (I think that’s everyone right?) knows the pains associated with bluetooth. When it works, it works great. However, when the device loses its pairing, it’s a mess. Plus, we all know how much fun it is to get various devices to pair in the first place.”

Opening lines – What’s Holding Back the Always Connected Wearable Health Sensors We Need? | John Lynn | Healthcare IT Today May 26, 2021

About Healthcare IT Today
With over 14,000 articles, Healthcare IT Today is the leading provider of healthcare IT news, insight, and analysis. As part of the Healthcare Scene media network, our mission is to share practical innovations in and the best uses of technology in healthcare.

Healthcare IT Today is owned and operated by Healthcare Scene, a media company that provides healthcare news, insight, and industry analysis. 

Copyright © 2005-2021 HealthcareScene.com.



Bird-like robots could assist in medical emergencies and hunt down drones | Tech Xplore JUNE 1, 2021 / Robotics

by Gareth Willmer, Horizon: The EU Research & Innovation Magazine

Bird-like robots could assist in medical emergencies and hunt down drones |   Tech Xplore JUNE 1, 2021 / Robotics

The GRIFFIN project is seeking to create prototypes of highly autonomous, ultra-lightweight robot birds. Credit: GRVC Robotics Lab
The GRIFFIN project is seeking to create prototypes of highly autonomous, ultra-lightweight robot birds. Credit: GRVC Robotics Lab

A bird flaps its wings, glides using air currents and then smoothly descends to perch on a pole. But this is not just any bird, it’s a robot bird. And robots like these could in the next decade be used to respond to emergencies or to hunt down drones posing a threat to safety or security.


Medical AI models rely on ‘shortcuts’ that could lead to misdiagnosis of COVID-19 | Tech Xplore MAY 31, 2021 / Computer Sciences / Machine learning & AI

by University of Washington

Credit: Unsplash/CC0 Public Domain
Credit: Unsplash/CC0 Public Domain

“Artificial intelligence promises to be a powerful tool for improving the speed and accuracy of medical decision-making to improve patient outcomes. From diagnosing disease, to personalizing treatment, to predicting complications from surgery, AI could become as integral to patient care in the future as imaging and laboratory tests are today.”


More information: AI for radiographic COVID-19 detection selects shortcuts over signal, Nature Machine Intelligence (2021). DOI: 10.1038/s42256-021-00338-7 , http://www.nature.com/articles/s42256-021-00338-7

Journal information: Nature Machine Intelligence


Sourced via: Technology newsScience 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.



Scientists discover a new genetic form of ALS in children | Medical Xpress MAY 31, 2021 / Genetics / Neuroscience

by National Institutes of Health

“In a study of 11 medical-mystery patients, an international team of researchers led by scientists at the National Institutes of Health and the Uniformed Services University (USU) discovered a new and unique form of amyotrophic lateral sclerosis (ALS). Unlike most cases of ALS, the disease began attacking these patients during childhood, worsened more slowly than usual, and was linked to a gene, called SPTLC1, that is part of the body’s fat production system. Preliminary results suggested that genetically silencing SPTLC1 activity would be an effective strategy for combating this type of ALS.”


Scientists discover a new genetic form of ALS in children | Medical Xpress MAY 31, 2021 / Medical research / Neuroscience

NIH researchers discovered a new form of ALS that begins in childhood. The study linked the disease to a gene called SPLTC1. As part of the study, NIH senior scientist Carsten Bonnemann, M.D., (right) examined Claudia Digregorio (left), a patient from the Apulia region of Italy. Credit: NIH/NINDS.

https://medicalxpress.com/news/2021-05-scientists-genetic-als-children.html

NIH researchers discovered a new form of ALS that begins in childhood. The study linked the disease to a gene called SPLTC1. As part of the study, NIH senior scientist Carsten Bonnemann, M.D., (right) examined Claudia Digregorio (left), a patient from the Apulia region of Italy. Credit: NIH/NINDS.


Sourced via Medicine and Health newsScience X

More information: Childhood amyotrophic lateral sclerosis caused by excess sphingolipid synthesis, Nature Medicine (2021). DOI: 10.1038/s41591-021-01346-1 , http://www.nature.com/articles/s41591-021-01346-1
Journal information: Nature Medicine


Sourced via Medicine and Health newsScience X Newsletter

Science X is a network of high-quality websites that provides the most complete and comprehensive daily coverage of science, technology, and medical news.


On That Edge of Fear’: One Woman’s Struggle With Sickle Cell Pain | New York Times May 30, 2021, By John Eligon

Cures for a disease that mostly afflicts Black people seem near but may come too late for Lisa Craig, who lives with an agony like knives stabbing her bones.

I Was Paralyzed By Severe Depression. Then Came Ketamine. | New York Times May 30, 2021, By Zoe Boyer

Ms. Boyer is a writer who began ketamine treatment for depression in 2016.


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/

Carrot, Pumpkin & Sweet Potato Soup June 1, 2021 | Bake Play Smile – Sweet. Sinful. Simple.

Sourced through Feedspot, find out what it is here

A healthy and nourishing sweet potato soup recipe with the added goodness of carrot and pumpkin. With its silky texture and sweet flavour undertones, this soup is ready to eat in just 40 minutes… the perfect midweek dinner! Serve with soft and fluffy homemade bread rolls. The post Carrot, Pumpkin & Sweet Potato Soup appeared […]Bake Play Smile – Sweet. Sinful. Simple.

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Plantar fasciitis: how to ease pain and find the right treatment Patient 20-May-21

Authored by Gillian Harvey · Reviewed by Dr Sarah Jarvis MBE

“Plantar fasciitis is a common cause of heel pain, caused by inflammation of the tissue at the bottom of your foot. The pain is caused by small tears and inflammation in the plantar fascia (the tissue that supports the arch of your foot). But how can you tell what’s causing your heel pain, is there anything you can do to ease the condition at home and when should you seek specialist support?”

Plantar fasciitis: how to ease pain and find the right treatment Patient 20-May-21

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

https://patient.info/news-and-features/plantar-fasciitis-how-to-ease-pain-and-find-the-right-treatment

Sign up to receive their e-News in your mailbox!

Registered number: 10004395 / Registered office: Fulford Grange, Micklefield Lane, Rawdon, Leeds, LS19 6BA. Patient is a UK registered trade mark. https://patient.info/



#chronicillnessVOICE June 1


Selection of posts by WordPress chronic bloggers that we support and follow


ARTIFICIAL INTELLIGENCE POWERED PROSTHETIC ARM ENABLES DRUMMER TO CONTINUE MAKING MUSIC
Jason is on Instagram as Cybernetx and his music can be found on Spotify, Apple Music and Soundcloud.
Jason is on Instagram as Cybernetx and his music can be found on Spotify, Apple Music and Soundcloud.

Artificial Intelligence Powered Prosthetic Arm Enables Drummer To Continue Making Music By Venkat – Assistive Technology Blog 24 May 2021 | (Source: Google)


“My Silly Illy”: Ostomate, turned published author, helps children and families cope. By Natalie Hayden – lights camera crohn’s May 24 2021

When Campbell Dwyer was three years old, her health took a turn for the worse. She was diagnosed with Hirschsprung disease, a rare congenital disease that affects the colon and intestinal motility. She underwent three surgeries by the time she was four.

Opening paragraph “My Silly Illy”: Ostomate, turned published author, helps children and families cope. By Natalie Hayden – lights camera crohn’s May 24 2021

Weekly Round-Up from Journeying Beyond Breast Cancer by Abigail Johnston, No Half Measures May 30, 2021.


Advice For The Newly Disabled By My Rockin Disabled Life May 29, 2021.

Don’t be afraid to ask for help because it’s okay if you can’t do something on your own and need a little help. Asking for help is not weakness but it’s strength because it takes a strong person to realize that you can’t do everything on your own and need a little extra help.

Advice For The Newly Disabled By My Rockin Disabled Life May 29, 2021.

Gut Check: Does Gut Health Affect Overall Wellness? by Terri – Reclaiming HOPE May 28, 2021


Is there a doctor in the house? The value of a medical degree for a career in MedComms | Posted on May 19, 2021 by Peter Llewellyn, FirstMedCommsJob.com

Webinar with Beth Wynne-EvansNatasha Daoud and Jessica Sale who have all qualified in clinical medicine and then transitioned into careers in MedComms.

Learn how this specialist group believes they offer first-hand clinical experience to colleagues and clients, adding value as they can provide insight into what resonates with fellow health care professionals (HCPs) and patients, to leave a lasting impact on prospective prescribers.

This will be of interest to anyone who is looking for insights in to MedComms as a career, but in particular anyone with a medical background.

Recorded 19 May 2021 as a MedComms Networking webinar. Produced by NetworkPharma.tv



WordPress.com


Exoskeleton-Assisted Walking May Improve Bowel Function in People With Spinal Cord Injury | Neuroscience News May 29, 2021

Source: Kessler Foundation

A team of researchers has shown that physical intervention plans that included exoskeleton-assisted walking helped people with spinal cord injury evacuate more efficiently and improved the consistency of their stool.

This finding was reported in Journal of Clinical Medicine.


Exoskeleton-Assisted Walking May Improve Bowel Function in People With Spinal Cord Injury |   Neuroscience News May 18, 2021
Two types of exoskeletons were used in this multi-site study, ReWalk and Ekso GT. This photo shows an Ekso GT in the Tim & Caroline Reynolds Center for Spinal Stimulation at Kessler Foundation. Credit: Kessler Foundation

https://neurosciencenews.com/exoskeleton-sci-bowel-function-18519/

Link to the original research is provided and is open access.

“Our goal is to improve the quality of life of those with chronic spinal cord injury, and these encouraging results will help inform future studies on the emerging field of mobility intervention.”

Dr. Gorman, co-author and chief of the Division of Rehabilitation Medicine at the University of Maryland Rehabilitation and Orthopaedic Institute.

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.



Surgeons Call for a ‘New Deal for Surgery’ to Reduce ‘Colossal’ BacklogMedscape UK Dawn O’Shea, May 28, 2021


The College’s New Deal report makes 12 recommendations to government, including both long and short-term measures designed to improve the future sustainability of surgical services.

Excerpt: Surgeons Call for a ‘New Deal for Surgery’ to Reduce ‘Colossal’ Backlog – Medscape UK Dawn O’Shea, May 28, 2021

WebMD, LLC
395 Hudson St
New York, NY 10014
www.medscape.com

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

http://news.emjreviews.com

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

https://www.emg-gold.com/



Top 5 Challenges Of Decentralized Clinical Trials And How To Overcome Them | Article | March 30, 2021, Clinical Leader

Source:  Oracle Health Sciences

By James Streeter, global vice president life sciences product strategy, Oracle

Copyright © 1996-2021 VertMarkets, Inc. All Rights Reserved.


Novartis plots ‘next frontier’ of MS treatment — and it could spell a buyout for a small Swiss player | Endpoints News – June 1, 2021

Nicole DeFeudis – Associate Editor Endpoints News


“Immune tolerance therapies offer the potential to intervene early and decisively in the development of MS, to potentially stop progression of the disease,” the spokesperson told Endpoints News in an email.”

Excerpt: Novartis plots ‘next frontier’ of MS treatment — and it could spell a buyout for a small Swiss player | Endpoints News – June 1, 2021

Sourced via: John Carroll — Endpoints News | Subscription may be required

Endpoints News

Essential biopharma news and analysis
Independent journalism since 2016

#chronicillnessVOICE June 1


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.

https://fibroflutters.com/2021/02/20/health-medical-research-patient-pharma-newsletters-selfupdating/



The above post includes a link to our very own The #chronicillnessVOICE Daily newsletter for everyone #notjustpatients paper.li


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AI in radiology – AI-enabled opportunistic screening in medical imaging
Join this exclusive webinar – Discussing the impact of AI-enabled opportunistic screening …
https://fibroflutters.com/2020/08/07/where-can-you-find-fibromyalgia-and-chronic-pain-resources-across-the-globe-find-out-here/

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 


Last Chance! Be a part of the discussion on assessing and managing back pain in the workplace. | IASP Global Year

Register now to attend the free, live 2021 Global Year About Back Pain webinar this Thursday, 3 June at 8:00 EDT (Convert to your local time). 

Read all about it and register here

International Association for the Study of Pain


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.” 


ARDEnt Group

Organiser of Making the Unseen Seen ARDEnt Report


#impactofcovid19 #rarediseases #empowerment #healthcare #report #raredisease #rare2021



Virtual Public Genomics Café: Haematology

Tuesday, 15 June 2021 at 11:00 / Online event

This specialist virtual public genomics café will focus on haematology, specifically hereditary anaemias and iron overload. All welcome!

Events by The Wales Gene Park


The Wales Gene Park
Cardiff University
The Institute of Medical Genetics
Heath Park
Cardiff   CF14 4XN
Parc Geneteg Cymru
Prifysgol CaerdyddY
Sefydliad Geneteg Feddygol
Y Mynydd Bychan           
Caerdydd  CF14 4XN 

Tickets via Eventbrite



Drug Repurposing for Rare Diseases 2021

15th – 16th June 2021

#DrugRepo21 – Findacure


“Let’s take centre stage and harness the true power of drug repurposing whilst all eyes are on this cost-effect alternative to drug development.”

Tickets via Eventbrite


2021 RARE Drug Development Symposium: Registration Now Open

Sign up for the 2021 RARE Drug Development Symposium

The landscape of rare drug development is constantly evolving. Gain knowledge on these important changes; interact with experts, patients, and advocates in the field and ultimately discover your role in advancing drug therapies at our 2021 RARE Drug Development Symposium happening virtually June 9-11, 2021.


New to this year’s event is an optional pre-conference workshop on June 9, targeted to attendees who are in the early stages of research engagement and looking to build knowledge in core competencies that will be expanded upon in the main event program.


Register now for this year’s event to deepen your understanding of rare disease drug development efforts!

2021 RARE Drug Development Symposium
June 9, 2021—June 11, 2021
LOGO

Got an event, or webinar, you want to share send us an email with ‘please share this event’ in the subject line!

#chronicillnessVOICE June 1

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.

– Check Rare

By: 

Check out the post here:

Keep up to date with Rare Disease and sign up for Check Rare newsletters

CheckRare.com

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 1, YOUR SUPPORT IS GREATLY APPRECIATED

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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

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.



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