#chronicillnessVOICE July 6, health, medical, pharma and research news

#chronicillnessVOICE July 6 – 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 July 6 – NEWS

Editors pick of the days newsletters

An illustration of Florence Nightingale making her rounds in the Barrack hospital at Scutari, during the Crimean War.
LONDON NEWS/HULTON ARCHIVE/GETTY IMAGES

Florence Nightingale in the age of Covid-19 | STAT First Opinion | 29 June 2021

By Danielle Ofri

Florence Nightingale’s observations on nursing and medical care in the mid- to late-1800s could hardly be more prescient today.


Please note some subscriptions may require a fee.


A man uses Biel digital glasses that help people with limited sight better perceive their surroundings. Credit: Unknown

Spanish couple develop high-tech specs to help son see | Tech Xplore JULY 2, 2021 / Engineering, Hi Tech & Innovation

by Daniel Silva

Opening lines: When their two-year-old son Biel started falling over a lot and had difficulty climbing stairs after learning to walk, Jaume Puig and his wife sought medical help to figure out the problem.


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.



Lab mates in the Bao Research Group at Stanford demonstrate the flexibility and stretchability of their artificial skin made using their newly created printing method. Credit: Yuqing Zheng
Lab mates in the Bao Research Group at Stanford demonstrate the flexibility and stretchability of their artificial skin made using their newly created printing method. Credit: Yuqing Zheng

New chemistry enables using existing technology to print stretchable, bendable circuits on artificial skin | Tech Xplore JULY 5, 2021 / Engineering, Electronics & Semiconductors

by Andrew Myers, Stanford University


Opening Lines: “Chemical engineer Zhenan Bao and her team of researchers at Stanford have spent nearly two decades trying to develop skin-like integrated circuits that can be stretched, folded, bent and twisted—working all the while—and then snap back without fail, every time. Such circuits presage a day of wearable and implantable products, but one hurdle has always stood in the way.”


More information: Yu-Qing Zheng et al, Monolithic optical microlithography of high-density elastic circuits, Science (2021). DOI: 10.1126/science.abh3551
Journal information: Science


Bioresorbable tissue scaffolds. Credit: University of Birmingham
Bioresorbable tissue scaffolds. Credit: University of Birmingham

Breakthrough in tissue engineering as ‘shape memory’ supports tissue growth | Medical Xpress | JULY 5, 2021 / Biomedical technology

by University of Birmingham


Opening Lines: Research published today has demonstrated the viability of 3D-printed tissue scaffolds that harmlessly degrade while promoting tissue regeneration following implantation.


Journal information: Nature Communications

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.


Triple-negative breast cancer cells are shown on the left. Without the RNA-binding protein YTHDF2 (right), fewer cancer cells survived. Credit: UC San Diego Health Sciences

Potential drug target for difficult-to-treat breast cancer: RNA-binding proteins | Medical Xpress | JULY 2, 2021 / Oncology & Cancer
Triple-negative breast cancer cells are shown on the left. Without the RNA-binding protein YTHDF2 (right), fewer cancer cells survived. Credit: UC San Diego Health Sciences

Potential drug target for difficult-to-treat breast cancer: RNA-binding proteins | Medical Xpress | JULY 2, 2021 / Oncology & Cancer

by University of California – San Diego


Opening Lines: In cancer research, it’s a common goal to find something about cancer cells—some sort of molecule—that drives their ability to survive, and determine if that molecule could be inhibited with a drug, halting tumor growth. Even better: The molecule isn’t present in healthy cells, so they remain untouched by the new therapy.

More information: Molecular Cell (2021). DOI: 10.1016/j.molcel.2021.06.014 , http://www.cell.com/molecular-cell/fu … 1097-2765(21)00493-7
Journal information: Molecular Cell


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

Sourced via Medicine and Health newsScience X

Fast Five Quiz: Vitamin C | Medscape | June 24, 2021

by Romesh Khardori, MD, PhD

From which foods contain the highest amounts of vitamin C to clinical information about its link to disease states, test your knowledge with this short quiz.

Medscape / WebMD, LLC

Click here to read the July e-News in your browser | 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/

How My Son Taught Me That Crying Can Boost My Mental Health | By Ben Taylor | Tiny Buddha

Sourced through Feedspot, find out what it is here

“And some days life is just hard. And some days are just rough. And some days you just gotta cry before you move forward. And all of that is okay.” ~Unknown Over the years I’ve built myself a bit of a reputation as “the emotional one.” I was always the first to cry at weddings, […]

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Read posts by those I follow on FEEDSPOT – RSS Feed

Escaping the Abyss of Chronic Pain | Psychology Today | July 4 2021

David Hanscom MD – Anxiety: Another Name for Pain


Excerpt: Lack of sleep has a significant effect on creating symptoms – it is inflammatory4 and compromises coping capacity. It seemed like a solvable problem, and it was easy to follow my patients’ progress.


David Hanscom is an orthopedic spine surgeon who now teaches patients and medical practitioners how to solve chronic pain. His most recent work, The DOC (Direct Your Own Care) Journey, is anchored by a forthcoming app available Fall 2020.

Psychology Today is the world’s largest mental health and behavioral science destination online. It is the original and largest publishing enterprise that is exclusively dedicated to human behavior. Our motto is “Here to Help,” and the resources you’re accessing right now are the worldwide destination of choice for expert-authored information about psychology and mental health. Read more about Psychology Today…

How to deal with negative body image in summer
https://patient.info/news-and-features/how-to-deal-with-negative-body-image-in-the-summer

Common causes of summer rashes | Patient | 22 Jun 2021 newsletter

Authored by Gillian Harvey · Reviewed by Dr Sarah Jarvis MBE
07-Jun-21

“The start of summer is also the start of grass pollen season, a time when many people with hay fever start experiencing symptoms like sneezing, itching, watery eyes and a runny or blocked nose. When all you want to do is spend some time outdoors on a sunny day, hay fever can leave you feeling miserable and frustrated.”

Stay on top of allergies this summer Patient 22 Jun 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


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 July 6


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


Vecta Deluxe Mobile Sensory Station Turns Any Room Into Multi Sensory Room For Children On Autism Spectrum by Venkat, Assistive Technology Blog, July 5, 2021

Louie is meant to provide sensory relief to a child in an environment that may make them anxious. Louie has various soothing lights, sounds, music, bubbles, and colors that are controlled by the child. Using all these controls, the child can create a calming and soothing environment for themselves that will help them relax.

Excerpt: Vecta Deluxe Mobile Sensory Station Turns Any Room Into Multi Sensory Room For Children On Autism Spectrum by Venkat, Assistive Technology Blog, July 5, 2021

Seize the Moment! Spending Time with Loved Ones By Terri, Reclaiming HOPE July 2, 2021


Rude Comments People Have Said To Me Because I Am Disabled | by My Rockin Disabled Life July 1, 2021


What happens when a disabled person is arrested? By Zechariah Richardson, SATONMYBUTT July 2, 2021

There are many areas of disabled life that are covered on various websites and yet there are still many that are not discussed, and one topic came to mind whilst watching Police Interceptors. What happens when a disabled person is arrested in the UK?

Opening lines: What happens when a disabled person is arrested? By Zechariah Richardson, SATONMYBUTT July 2, 2021

The Patient Experience: What the IBD Community Say About Stelara By Natalie hayden, Me,lights camera crohn’s, June 28, 2021

…I remember how daunting and overwhelming taking the plunge into life on a biologic was and know I would have given anything to hear firsthand experiences from fellow IBD patients. This inspired me to launch a special series on Lights, Camera, Crohn’s hearing firsthand accounts from people like you and me, living life on biologics. So far, I’ve covered Remicade and Entyvio.

This week—we tackle Stelara (ustekinumab).

Excerpt: The Patient Experience: What the IBD Community Say About Stelara By Natalie hayden, Me,lights camera crohn’s, June 28, 2021

MAJOR RESEARCH PROJECT TO STUDY CHRONIC PAIN… By BACK PAIN BLOG UK…, July 4, 2021

The project will study the psychological and social factors that influence people’s experience of pain. To date, researchers understanding of their relative importance is limited and little is known how psychosocial factors influence biological signals of pain.

Excerpt: MAJOR RESEARCH PROJECT TO STUDY CHRONIC PAIN… By BACK PAIN BLOG UK…, July 4, 2021


WordPress.com


Many Of Us Feel ‘Empty’ – Understanding What It Means Is Important For Improving Our Mental Health | Neuroscience News July 3, 2021

Source: The Conversation

Many people report feeling “empty” within their daily lives. Researchers have identified mental health symptoms, including suicidal ideations, associated with emptiness and say more emphasis needs to be placed on this psychological problem.


Many of us may have described feeling ‘empty’ before. Image is in the public domain  Woman in mental health despair
Many of us may have described feeling ‘empty’ before. 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.


Rare Disease Focus: Lysosomal Storage Disorders – Check Rare

A selection of articles about Rare Disease Focus: Lysosomal Storage Disorders

https://checkrare.com/diseases/lysosomal-storage-disorders/


“It’s a Marathon Not a Sprint”: Advice for Rare Disease Parents – Check Rare June 29, 2021

By Peter Ciszewski

Nasha Fitter, CEO of the FOXG1 Research Foundation and Vice President of Rare Disease at Ciitizen, describes what it is like for parents of children with rare diseases and gives advice to parents whose children have just been diagnosed.


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

CheckRare.com


Study of the Week: New Gene Editing Approach to Treat Duchenne Muscular Dystrophy | Patient Worthy July 5, 2021

By James Moore


“Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we think is of particular interest…”

Patient Worthy


Biggest change to treatment of RA since the introduction of biologics in the early 2000s | NRAS 10 June 2021


DOWNLOAD our FREE 2021 accessible housing guide | Disability Horizons 05/07/2021

There are 14.1 million disabled people in the UK, yet only a staggering 9% of homes in England are accessible. Added to that, just 2.4% of new homes being built will be suitable for wheelchair users – outside of London this figure is just 1.5%.


Using my experiences living with cerebral palsy to start a buddying support service | Disability Horizons 29/06/2021

Entrepreneur and disability advocate David Bourroughs shares his experiences of living through the Covid-19 pandemic and how it inspired him to start his own social enterprise, Buddies for All, a community support group.


Assistant ‘robots’ showcased among innovative social care solutions | Digital Health – 6 July 2021


Rationale of GPDPR is there but trust issues need to be addressed | Digital Health – 29 June 2021


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/



Pharma in the crosshairs: How the FTC is expanding its antitrust powers under its new chair | Endpoints News – July 2, 2021

Zachary Brennan – Senior Editor


“Less than a month since her Senate confirmation, the new, young and staunchly progressive Federal Trade Commission chair Lina Khan is ready to up the pressure on unfair business practices, including at the largest pharma companies. To do that, Khan is rolling back restrictions on antitrust investigations and potentially opening the flood gates on Big Pharma M&A.”

OPENING PARAGRAPH: Pharma in the crosshairs: How the FTC is expanding its antitrust powers under its new chair | Endpoints News – July 2, 2021

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

Endpoints News

Essential biopharma news and analysis
Independent journalism since 2016

#chronicillnessVOICE July 6


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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We’re off mobilising for charity – 1 month long Superhero Series challenge
Using my rollator with its seat for those appropriately paced stops we …
PROUD PARTNERS – Precision Medicine Forum PATIENT WEEK
Patient Week convenes healthcare professionals, researchers, industry, payers and patients/patient advocates in …
Dazzle4Rare 2021 – #StrutYourStripes with us at ZebraStrutters to raise awareness!
A simple goal of signal boosting rare and undiagnosed patient and community …
#chronicillnessVOICE June 21 health, medical, pharma and research news
Bringing a varied selection of health news, medical news, pharma news, research …

https://fibroflutters.com/2020/08/07/where-can-you-find-fibromyalgia-and-chronic-pain-resources-across-the-globe-find-out-here/

EVENTS & WEBINARS


At Home Superheroes powered by Marvel
17 July to 14 August 2021

At Home Superheroes powered by Marvel

Introducing… Superheroes on Vacation!

“super-fun and flexible, month-long challenge….”

https://superheroseries.co.uk/at-home-superheroes

Please #FindyourPower + #Donate as we take on the At Home Superheroes challenge

This year ZebraStrutters have teamed up with Ataxia and Me and Dragon Valley Theatre.

We will be clocking up distance across the four weeks aiming for 15km. At ZebraStrutters Carole Scrafton and Mike Scrafton will be taking to the local streets around their homes. Raising awareness of rare disease Ehlers-Danlos as they strut their stuff, and for Ataxia. Being disabled Carole will be using her rollator and enjoying being able to complete short distances each day, which is the upside to this sponsored walk event.

Our Trustee and partner Alan Thomas will be pursuing his km goal on his trike and raising awareness for Ataxia. A rare movement disorder that he lives with and he founded and runs Ataxia and Me Charity.

Every Superhero and Sidekick will be entered into one of six SUPER teams – each with its own Marvel theme and led by a Celebrity Team Captain – to race a combined total of 55,553km on this epic, fun-packed (virtual) holiday tour!

Lee Ridley (@LostVoiceGuy) is our celebrity team ‘BlackPanther’ SuperHero leader (SuperheroTri Teams)

TeamAtaxia #Ataxia #AtaxiaDragons #ZebraStrutters


Dazzle4Rare 2021 – 8th – 15th August.

Once again this year at FibroFlutters we are supporting Dazzle4Rare 2021 and joining many Rare Disease groups, charities and organisations. Our mission is to help get our rare diseases noticed and increase awareness and much needed funding.

We are proud to partner with Kimberly Thomas-Tague and #Dazzle4Rare and join many other organisations to support this years campaign to raise awareness for Rare Diseases. 8th – 15th August.


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


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

#chronicillnessVOICE July 6

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.

Sarcoma Awareness Month – July

3 out of 4 people have never heard of sarcoma. Let’s change that.

Sarcoma UK

How you can help and Get Involved

People Make Sarcoma UK: Sarcoma Awareness Month & 10th Anniversary


Registered as a charity in England and Wales (1139869) and in Scotland (SC044260).


Talk to Us #WeListen – Samaritans campaign

Every year in July, Samaritans branches in the UK and Republic of Ireland hold local events to raise awareness that Samaritans are here to listen to anyone who’s struggling to cope, at any time of the day or night.

Talk to Us is one of the ways they raise awareness – for anyone who needs someone to listen, 24/7, without judgement or pressure.

Check out their Talk to Us #WeListen campaign

Samaritans is a charity registered in England and Wales (219432) and in Scotland (SC040604) and incorporated in England and Wales as a company limited by guarantee (757372). Samaritans Ireland is a charity registered in the Republic of Ireland (20033668) and incorporated in the Republic of Ireland as a company limited by guarantee (450409). Samaritans Enterprises is a private limited company (01451175).

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!

logos and info banner header link to home page

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


Learn More…


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