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

#chronicillnessVOICE June 14 – 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

GP Data for Planning and Research implementation date moved to Sept | Digital Health Hannah Crouch 8 June 2021 | AI AND ANALYTICS

“While this is welcome news, when you think about it, September is really not that far away, and it is essential that enough time is dedicated to informing patients about what is happening and what their rights are when it comes to consent.”

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

Reducing ED Visits with Remote Patient Monitoring in Primary Care | Colin Hung | Healthcare IT Today June 9, 2021

“The combination of simple technology and good service is helping to make remote patient monitoring (RPM) a key part of keeping patients healthy for primary care physicians. The team at Medical College of Georgia at Augusta University rolled out RPM and has seen a drop in avoidable ED visits and improved patient experience.”

Opening lines – Reducing ED Visits with Remote Patient Monitoring in Primary Care | By: Colin Hung | Healthcare IT Today June 9, 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.

A social robot that could help children to regulate their emotions | Tech Xplore JUNE 9, 2021 / Robotics

by Ingrid Fadelli

A social robot that could help children to regulate their emotions |   Tech Xplore JUNE 9, 2021 / Robotics

Page from discovery book that accompanied the creature during home deployments. Credit: Isbister et al.

Page from discovery book that accompanied the creature during home deployments. Credit: Isbister et al.

Excerpt: Researchers at University of California- Santa Cruz (UCSC), King’s College London, and a US-based company called Sproutel, and Committee for Children have recently developed a new socially assistive robot specifically designed to aid emotional regulation in children.

More information: Design not lost in translation: a case study of an intimate-space socially assistive robot for emotion regulation. arXiv:2104.11340 [cs.HC]. arxiv.org/abs/2104.11340

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.

3D-printed custom medical devices: Boost performance, cut infection | Medical Xpress JUNE 10, 2021 / Biomedical technology

by University of Nottingham

“Using a new 3D printing process, University of Nottingham researchers have discovered how to tailor-make artificial body parts and other medical devices with built-in functionality that offers better shape and durability, while cutting the risk of bacterial infection at the same time.”

Multimaterial 3D printing process. Credit: University of Nottingham

3D-printed custom medical devices: Boost performance, cut infection

Multimaterial 3D printing process. Credit: University of Nottingham

More information: Yinfeng He et al, Exploiting Generative Design for 3D Printing of Bacterial Biofilm Resistant Composite Devices, Advanced Science (2021). DOI: 10.1002/advs.202100249
Journal information: Advanced Science

Wearable electroencephalogram device gathers reliable sleep data from the ear | Medical Xpress JUNE 10, 2021 / Health

by American Academy of Sleep Medicine

Preliminary results of a new study show that a wearable electroencephalogram device that gathers data from the ear measures sleep as reliably as traditional EEG electrodes attached to the scalp.

More information: Martin Hemmsen et al, 272 Long-term monitoring of trait-like characteristics of the sleep electroencephalogram using ear-EEG, Sleep (2021). DOI: 10.1093/sleep/zsab072.271
Journal information: Sleep

Sourced via Medicine and Health 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.

10 things to do in a park this summer | Heart Matters – British Heart Foundation

Parks have been life-savers for many of us for the past year, and now that the weather is better, there are plenty of ways to enjoy your local green spaces while getting active too.

Woman using an outdoors gym - 10 things to do in a park this summer | Heart Matters - British Heart Foundation
Woman using an outdoors gym

Check out this healthy recipe > Jerk chicken with sweetcorn salsa

Whatever the weather, bring some sunshine onto your plate with this healthy and easy recipe for delicious jerk-spiced chicken, paired with a sweetcorn and lime salsa.

Visit bhf.org.uk

British Heart Foundation is a registered Charity No. 225971. Registered as a Charity in Scotland No. SC039426.

We Could Be Wrong About How the Brain Works | Psychology Today | Neuroscience

Our cognitive biases limit our ability to understand our own brains.

Posted June 9, 2021 | Reviewed by Gary Drevitch

Brain phenomena that many neuroscientists believe are just side shows may actually be the main event.


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/

The Relief of Letting Go and Living Fully Despite My Anxiety – Tiny Buddha By Ashlee Pearce

Sourced through Feedspot, find out what it is here

“We only live once, Snoopy.” ~Charlie Brown “Wrong. We only die once. We live every day.” ~Snoopy I am an anxious person. I haven’t always been though. When I had my first child, fourteen years ago, it was the week after my father died. My son was born and went right to the NICU where […]


Read posts by those I follow on FEEDSPOT – RSS Feed

How to deal with negative body image in summer

How to deal with negative body image in summer Patient 25-Apr-18

Authored by Lydia Smith · Reviewed by Dr Sarah Jarvis MBE

For many of us, the arrival of summer is a welcome respite from the winter months, with the longer, warmer days and sunshine. But for people who struggle with poor body image, summer can be a time of anxiety, low mood and feelings of insecurity – particularly when we’re inundated with unhelpful reminders about being ‘beach body ready’.

How to deal with negative body image in summer Patient 25-Apr-18

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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#chronicillnessVOICE June 14

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

June Is international Men’s Health Month By Terri, Reclaiming Hope, June 4, 2021

Getting back to normal life and some exciting news By Twitchy Woman JUNE 11, 2021

I am happier now I stopped trying to be someone I am not! | by Zechariah Richardson – SATONMYBUTT June 7, 2021

How To Get Your Sleep With Chronic Pain By My Rockin Disabled Life June 9, 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


Largescale Brain Epigenetics Study Provides New Insights Into Dementia | Neuroscience News June 10, 2021

Source: University of Exeter

A new study sheds light on how genes are regulated in dementia. Researchers also identified 84 novel genes linked to dementia.

Original Research: Open access.
“A meta-analysis of epigenome-wide association studies in Alzheimer’s disease highlights novel differentially methylated loci across cortex” Nature Communications

Exoskeleton-Assisted Walking May Improve Bowel Function in People With Spinal Cord Injury |   Neuroscience News May 18, 2021

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

“The findings were subsequently confirmed in an independent set of brain samples from the Brains for Dementia Research cohort funded by the Alzheimer’s Society and Alzheimer’s Research UK.”

Excerpt: Largescale Brain Epigenetics Study Provides New Insights Into Dementia | Neuroscience News June 10, 2021

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.

Congenital and Genetic Conditions – Check Rare

A selection of articles about varying Congenital and Genetic Conditions


Metabolic Disorders – Check Rare

A selection of articles about varying Rare Metabolic Disorders


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


Rare Classroom: Familial Partial Lipodystrophy | Patient Worthy by James Moore June 11, 2021

Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most mysterious diseases and conditions. There are thousands of rare diseases out there, but only a very small number of them have viable treatments and regularly make the news. This series is an opportunity to learn the basics about some of the diseases that almost no one hears much about or that we otherwise haven’t been able to report on very often.

Rare Classroom | Patient Worthy

Patient Worthy

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


Subscription is required


Severe Disease Increases Necessity For A Patient-Centric Approach | Article | May 28, 2021, Clinical Leader

By Ed Miseta, Chief Editor, Clinical Leader

“Spinal muscular atrophy (SMA) is a disease caused by a genetic deficiency in a gene known as SMN1, which leads to patients being unable to perform basic tasks such as standing or walking. Scholar Rock recently completed a Phase 2 proof-of-concept trial and is excited about the results and the potential it represents for patients with SMA.”

Opening paragraph: Severe Disease Increases Necessity For A Patient-Centric Approach | Article | May 28, 2021, By Ed Miseta, Chief Editor, Clinical Leader
Copyright © 1996-2021 VertMarkets, Inc. All Rights Reserved.

UPDATED: Ex-FDA commish Stephen Hahn joins Flagship, a venture group that spawned Covid-19 vaccine maker Moderna | Endpoints News – June 14, 2021

John Carroll – Editor & Founder Endpoints News

“Former FDA commissioner Stephen Hahn is joining Flagship Pioneering, the venture outfit that founded Moderna — which raced its way to an FDA EUA for a Covid-19 vaccine that is making billions of dollars– as the new CMO of its Preemptive Medicine and Health Security initiative.”

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 14

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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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 

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

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.


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


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.


Diabetes Awareness Week takes place from 14th – 20th June, 2021. This year, we’ll be telling #DiabetesStories from all corners of the UK.”

Diabetes Awareness Week takes place from 14th – 20th June, 2021. This year, we’ll be telling #DiabetesStories from all corners of the UK.

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

Rare Chromosome Disorder Awareness Week 2021

This year is the 6th Global Rare Chromosome Disorder Awareness Week which will run from Sunday 16th – Friday 21st June.

Each day has a theme….

To help you get involved, they’ve given each day a special theme to help you get involved and spread the word in your own way. To find out more visit their website Rare Chromosome Disorder Support Group. Registered charity no. 1110661

Download this profile pic via the website


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!


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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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