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#chronicillnessVOICE May 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.

#chronicillnessVOICE May 20 – health, patients, medical, research, pharma related news for everyone #notjustpatients

#chronicillnessVOICE May 20:

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 #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 May 20 – NEWS

Editors pick of the days newsletters

Robotic ‘Third Thumb’ use can alter brain representation of the hand | Tech Xplore MAY 19, 2021 / Robotics / Engineering

by University College London

Designer Dani Clode with her ‘Third Thumb’ device. Credit: Dani Clode

More information: P. Kieliba el al., “Robotic hand augmentation drives changes in neural body representation,” Science Robotics (2021). … /scirobotics.abd7935

Journal information: Science Robotics

Google aims to use AI to help recognize common skin conditions | Tech Xplore MAY 19, 2021 / Consumer & Gadgets / Machine learning & AI / REPORT

by Sarah Katz , Tech Xplore

Credit: Google

Provided the many uses of AI for healthcare—from breast cancer diagnosis to better detecting tuberculosis—Google plans to use artificial intelligence to help users learn more about common skin conditions. When combined with technology such as smartphones, this kind of medical knowledge can really improve the way individuals understand their own health.

More information: Bui, P., and Liu, Y. “Using AI to Help Find Answers to Common Skin Conditions.” Google, 18 May 2021, … ogy-preview-io-2021/

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.

Researchers identify potential approach to controlling epileptic seizures | Medical Xpress MAY 19, 2021 / Medical research / Neuroscience

by Case Western Reserve University

Researchers from Case Western Reserve University have identified a potential new approach to better controlling epileptic seizures.

Epilepsy nerves. Credit: Case Western Reserve University

Sourced via Medicine and Health newsScience X

More information: Wenbing Chen et al, Neddylation stabilizes Nav1.1 to maintain interneuron excitability and prevent seizures in murine epilepsy models, Journal of Clinical Investigation (2021). DOI: 10.1172/JCI136956
Journal information: Journal of Clinical Investigation

Genetic tools help identify a cellular culprit for type 1 diabetes | Medical Xpress Diabetes / Endocrinology & Metabolism MAY 19, 2021

by Scott Lafee and Yadira Galindo, University of California – San Diego

By mapping its genetic underpinnings, researchers at University of California San Diego School of Medicine have identified a predictive causal role for specific cell types in type 1 diabetes, a condition that affects more than 1.6 million Americans.

Credit: CC0 Public Domain

More information: Joshua Chiou et al, Interpreting type 1 diabetes risk with genetics and single-cell epigenomics, Nature (2021). DOI: 10.1038/s41586-021-03552-w
Journal information: Nature

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.

New antimicrobial surface reduces bacteria build-up on medical instruments | MAY 19, 2021 / Biology / Cell & Microbiology / Biotechnology

by Monash University

Monash University researchers have engineered new antimicrobial surfaces that can significantly reduce the formation of bacteria on medical instruments, such as urinary catheters, and reduce the risk of patient infection while in hospital.

Monash University researchers have developed a new 3D antimicrobial surface that can reduce bacteria build-up on medical equipment, like urinary catheters. Credit: Monash University

More information: Sara Ghavamian et al, Three-Dimensional Micropatterning Deters Early Bacterial Adherence and Can Eliminate Colonization, ACS Applied Materials & Interfaces (2021). DOI: 10.1021/acsami.1c01902
Journal information: ACS Applied Materials and Interfaces

A machine learning model behind COVID-19 vaccine development | MAY 19, 2021 / Biology / Biotechnology / Molecular & Computational biology

by Terri Park, Massachusetts Institute of Technology

When starting a vaccine program, scientists generally have anecdotal understanding of the disease they’re aiming to target. When COVID-19 surfaced over a year ago, there were so many unknowns about the fast-moving virus that scientists had to act quickly and rely on new methods and techniques just to even begin understanding the basics of the disease.

Credit: Pixabay/CC0 Public Domain

This story is republished courtesy of MIT News (, a popular site that covers news about MIT research, innovation and teaching.

Sourced via: Biology 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.

#CTD2021 – Clinical Trials Day

ABOUT #CTD2021 – Learn about Clinical Trials Day and why we celebrate.

Clinical Trials Day is a well-deserved ‘time out’ to recognize the people who conduct clinical trials and to say “thanks” for what they do every day to improve public health.

This day of celebration also provides our community with a unique opportunity to raise awareness of clinical trials – and of clinical research as a career option – among the greater public.

How Imperial’s clinical researchers rose to the challenge of vaccine trials 20 May 2021

by Ellyw Evans

CLINICAL TRIALS DAY – We speak to Imperial’s Clinical Research Facility on how they adapted their work during the pandemic to deliver several COVID-19 vaccine trials.

On International Clinical Trials Day, we recognise the work of the National Institute for Health Research (NIHR) Imperial Clinical Research Facility (CRF) and their involvement in delivering COVID-19 vaccine trials.

Imperial College London, South Kensington Campus, London SW7 2AZ

Should We Shift Focus to Preventing Prediabetes? | emg-health 17 May 2021 | Diabetes

A WAKE-UP call for patients and clinicians: this is how researchers sharing findings of increased cardiovascular risk in prediabetes have characterised their insights. A large-scale retrospective study has shown significantly greater rates of major cardiovascular events in patients with prediabetes.

Source: | Get more with their FREE newsletters  sign up here

EMJ | Part of EMG-Health (ID: 08198092)

May lockdown easing: what are the new restrictions? Patient May 2021

Across the UK, COVID-19 restrictions are changing and many of us will be able to see loved ones for the first time in months. But it’s as important as ever that we take precautions to stay safe.

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.

What is health inequity? | Medical News Today

Medically reviewed by Lauren Castiello, MS, AGNP-C

Written by Jayne Leonard on May 16, 2021

Health inequity refers to avoidable differences in the health of different social groups. Read on to learn about examples, its causes, and more.

Medical News Today – Healthline Media UK Limited, a Red Ventures company
660 3rd Street, San Francisco, CA 94107

Health Information Technology Must Enhance Collaboration and Patient Care | Society for Participatory Medicine

By Danny Sands, MD | May 14, 2021

Dr. Danny Sands is a co-founder and the chief advocacy officer of the Society for Participatory Medicine.

Subscribe for their Email Updates and get the latest health and medical information delivered direct to your inbox.

#chronicillnessVOICE May 20

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

Virtual Education Series Aims To Help Public Understand Alzheimer’s And Dementia By Assistive Technology Blog 17 May 2021

The Harsh Realities Of Living With Frequent Headaches And Migraines By – My Rockin Disabled Life May 13 2021

I am so bad at pacing! by Zechariah Richardson May 13, 2021

“Ryan Litwin – A Supporter of Ulman Foundation’s 4K for Cancer” A Ballsy Sense of Tumor May 13, 2021

Fibromyalgia fatigue: hitting the wall by Nikki – Brainless Blogger May 19, 2021


“Reflexology is an effective holistic therapy for patients with fibromyalgia. Reflexology is becoming recognised as one of the more profound ways to help balance the body.”

Its Ehlers-Danlos Awareness Month

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!

Study Finds Potential Causality Between Blood Clot Factors and Migraine With Aura | Neuroscience News May 18, 2021

Source: Brigham and Women’s Hospital

Four coagulation measures were associated with migraine with aura. These hemostatic factors may have a causal role in migraine with aura.

Individuals who experience MA also face a heightened risk of stroke and cardiovascular disease, although scientists continue to explore why this correlation exists. Image is in the public domain

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.

Exhausted Doctors Seek Respite Before Further NHS ReformsMedscape UK

The British Medical Association (BMA) has echoed its calls for doctors to be allowed to rest and recover ahead of tackling the backlog of non-COVID care, following last week’s Queen’s speech to Parliament.

Cite this: Priscilla Lynch. Exhausted Doctors Seek Respite Before Further NHS Reforms – Medscape – May 17, 2021.

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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

EMJ reviews all of the breaking news from the major healthcare congresses across Europe and North- America. Subscribe for updates


Subscription is required

Looking to reshape the metastatic cancer landscape, HiberCell fills the tank with a slate of mid-stage tests queued up | Endpoints News – May 19, 2021

Max Gelman – Associate Editor Endpoints News

“These are the cells that create and extend the window of clinical dormancy,” Rigby told Endpoints. “It’s how some patients with breast cancer have the ability to be fine for 20 years and then it comes back … we believe they’re instrumental in metastatic recurrence.”

Sourced via: John Carroll — Endpoints News 19 May | Subscription may be required

Endpoints News

Essential biopharma news and analysis
Independent journalism since 2016

#chronicillnessVOICE May 20

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

Scroll for other posts

RAREfest22 – At the forefront of this event are the patients themselves!
RAREfest22 is the world's only rare disease-inspired festival attracting an audience of …
International Fibromyalgia Awareness Day – Happy 8th Birthday to FibroFlutters
It doesn’t matter where you live in the World when you are …
Redevelopment and rebranding underway at Flutters and Strutters
Our site is currently old and sporting some posts that need attention. …
Real World Evidence Live: Rare Diseases & Innovative Therapies
Real-World Evidence 2022: Rare Diseases and Innovative Therapies will unite healthcare stakeholders …


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

Young People’s Virtual Genomics Café

Wed, 26 May 2021 at 18:00

Are you a young person interested in finding out more about genomics and health, or affected by a rare or genetic condition? Join us for Young People’s Genomics Café!

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

Webinar series

How genetics and genomics are being leveraged to support modern drug hunting, and how this is being applied in big pharma | Frontline Genomics

Webinar 1: Leveraging genetics and genomics for drug discovery and development
Thursday 13th May – 3pm BST/ 4pm CEST/ 10am EDT

This webinar will focus on the roles genetics and genomics are playing in modern drug discovery, how biopharma is approaching genomics-led drug discovery and development across the pipeline, how processes are being improved and what this could mean going forward.

This has already taken place

Webinar 2: Functional Genomics tools for target ID & validation
Thursday 20th May – 3pm BST/ 4pm CEST/ 10am EDT

Functional genomics presents a huge opportunity to understand the targetable genome and how this can be leveraged for drug discovery. This webinar will discuss the different technologies that biopharma is leveraging for functional genomics studies, evaluate their limitations and future direction.

Webinar 3: Coupling genomic data with diverse datasets
Thursday 27th May – 3pm BST/ 4pm CEST/ 10am EDT

While genetics and genomics present a huge opportunity for drug discovery, the increasing ability and ease to capture multi-omics data, or couple “omics” data with imaging data, presents a huge opportunity to translate findings into targets. This webinar will focus on the opportunities to leverage diverse data for drug target discovery, address the challenges of this at scale and present opportunities for future developments.

This webinar series has been made possible due to the kind support of ‘Frontline Genomics‘ partner 10x Genomics.

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!

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

#chronicillnessVOICE May 20

Raise your #chronicillnessVOICE


Charitable Radio launches this Sunday at 11am.

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.

May is Huntington Disease Awareness Month – Check Rare

By: Victoria Radke | Published on: May 15, 2021

Initiated by the Huntington Society of Canada, Huntington Disease Awareness Month has since become a global movement. Organizations such as the Huntington Disease Society of America and the European Huntington Association have joined in through campaigns like #LetsTalkAboutHD, which encourages families to share their experiences with Huntington disease on social media.

Huntington disease is a debilitating, inherited, neurodegenerative disorder.

Check out the post here:

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

Open Medicine Foundation (OMF)

Driving research of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS), Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia and Post COVID .

“As the largest nonprofit organization dedicated to ME/CFS research, we believe in the power of community and that life-changing results and research advancements can be made when we work together. Please support our #MayMomentum campaign today.”

Help support May Momentum by donating to the Open Medicine Foundation fundraiser! Learn more about May Momentum, and the important research projects donations help to fund:

OMF is a non-profit 501(c)(3) organization
(EIN# 26-4712664). All donations are tax-deductible to the full extent allowed by law.

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.”



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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