#chronicillnessVOICE May 19 – health, patients, medical, research, pharma related news for everyone #notjustpatients
#chronicillnessVOICE May 19:
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
#chronicillnessVOICE May 19
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 19 – NEWS
Editors pick of the days newsletters
Team builds personal AI for teaching kids living on autistic spectrum | Medical Xpress MAY 18, 2021
by Milady Nazir, University of Texas at San Antonio
UTSA has established a wearables and artificial intelligence laboratory to provide precision treatment plans to improve learning among those diagnosed with autism spectrum disorder (ASD).
https://medicalxpress.com/news/2021-05-team-personal-ai-kids-autistic.html
Sourced via Medicine and Health news – Science X
More information: Mesenchymal stromal exosome–functionalized scaffolds induce innate and adaptive immunomodulatory responses toward tissue repair, Science Advances (2021). DOI: 10.1126/sciadv.abg4123
Journal information: Science Advances
Researchers identify a new mechanism by which transplanted stem cells treat disease | Medical Xpress Biomedical technology MAY 18, 2021
by University of California, Irvine
UCI scholars Zachary W. Wagoner, a graduate student researcher in cellular & molecular biosciences, and Weian Zhao, professor of pharmaceutical sciences, have identified a new mechanism by which transplanted stem cells treat disease. Their findings are contrary to the long-standing conventional wisdom that diseased tissue is repaired through stem cells differentiating into new cells or producing beneficial molecular secretions.
“Our study can transform our understanding of how transplanted stem cells actually work in the body to treat disease,” says Weian Zhao, UCI professor of pharmaceutical sciences. He and graduate student researcher Zachary Wagoner are co-authors of a commentary published online in Nature Biomedical Engineering. Credit: School of Pharmacy & Pharmaceutical Sciences / UCI
https://medicalxpress.com/news/2021-05-mechanism-transplanted-stem-cells-disease.html
Sourced via Medicine and Health news – Science X Newsletter
More information: Therapeutic implications of transplanted-cell death. Nature Biomedical Engineering (2021). doi.org/10.1038/s41551-021-00729-6
Journal information: Nature Biomedical Engineering
Science X is a network of high-quality websites that provides the most complete and comprehensive daily coverage of science, technology, and medical news.
Google teams with Samsung for wearables platform | Tech Xplore MAY 18, 2021 / Business
https://techxplore.com/news/2021-05-google-teams-samsung-wearables-platform.html
Irish health system struggling to recover from cyberattack | Tech Xplore MAY 18, 2021 / Security
by Sylvia Hui, Danica Kirka and Frank Bajak
A general view of St Luke’s Hospital which has been affected by a ransomware attack, in Rathgar, Dublin, Saturday, May 15 2021. Ireland’s health system is struggling to restore computers and treat patients four days after it shut down its entire information technology system in response to a ransomware attack. Authorities said hundreds of people were assigned to respond to the attack but it could be weeks before the public health service will return to normal. The chief clinical officer of Ireland’s public health service said Tuesday, May 18 that the intrusion was having “a profound impact on our ability to deliver care” and that disruptions would undoubtedly “mount in the coming days and weeks.” Credit: Niall Carson/PA via AP / https://techxplore.com/news/2021-05-irish-health-struggling-recover-cyberattack.html
https://techxplore.com/news/2021-05-irish-health-struggling-recover-cyberattack.html
Sourced via: Technology news – Science X
Science X is a network of high-quality websites that provides the most complete and comprehensive daily coverage of science, technology, and medical news.
Scientists discover five new species of listeria, improving food safety | phys.org MAY 18, 2021 / Biology / Cell & Microbiology
by Blaine Friedlander, Cornell University
https://phys.org/news/2021-05-scientists-species-listeria-food-safety.html
More information: Catharine R. Carlin et al, Listeria cossartiae sp. nov., Listeria immobilis sp. nov., Listeria portnoyi sp. nov. and Listeria rustica sp. nov., isolated from agricultural water and natural environments, International Journal of Systematic and Evolutionary Microbiology (2021). DOI: 10.1099/ijsem.0.004795
Embryo cryopreservation minimizes cryoinjuries, offers hope for would-be parents | phys.org MAY 18, 2021 / Biology / Biotechnology / Molecular & Computational biology
by American Institute of Physics
https://phys.org/news/2021-05-embryo-cryopreservation-minimizes-cryoinjuries-would-be.html
More information: Towards embryo cryopreservation-on-a-chip: A standalone microfluidic platform for gradual loading of cryoprotectants to minimize cryoinjuries, Biomicrofluidics, aip.scitation.org/doi/10.1063/5.0047185
Journal information: Biomicrofluidics
Sourced via: phys.org Biology news – Science X
Science X is a network of high-quality websites that provides the most complete and comprehensive daily coverage of science, technology, and medical news.
Pharma Industry SOLUTIONS >
VIDEO: Real World Dosing Solutions For Patients By Catalent
Whether you are considering an orally disintegrating tablet (ODT) to enhance pharmacokinetics through pregastric absorption, looking for a way to improve patient compliance, or seeking a marketing advantage for a valued brand, the Zydis® fast-dissolving formulation can help enhance the value of your investment and increase your product’s potential.
https://www.pharmaceuticalonline.com/doc/real-world-dosing-solutions-for-patients-0001
Source: Pharmaceutical Online | Get more pharma manufacturing insight with their FREE newsletter sign up here
In People with Cardiovascular Disease, High- or Low-Dose Aspirin Lowers Chance of Heart Attack or Stroke
People with cardiovascular disease taking aspirin to lower their chances of suffering a heart attack or stroke experienced similar health benefits, including reduced death and hospitalization for heart attack and stroke, whether they took a high or low dose of aspirin, according to a study published in the New England Journal of Medicine.
The PCORI-funded study, ADAPTABLE, is the first large-scale study of aspirin dosing to be embedded in real-world practice and the first randomized controlled trial conducted using PCORnet®, the National Patient-Centered Clinical Research Network.
Learn more about ADAPTABLE results
Patient-Centered Outcomes Research Institute | 1828 L Street, NW, Suite 900, Washington, DC 20036
The Celiac Scene E-News | May 2021
Where Every Day is Celiac Awareness Day!
Ymchwil Iechyd a Gofal Cymru bwletin / Health and Care Research Wales bulletin – Health and Care Research Wales
5 signs you may need physiotherapy | Nuffield Health
Nuffield Health Physiotherapist – Paul Kennedy
Physiotherapy isn’t a treatment reserved for elite athletes, or even for those recovering from an injury. In fact it can be used to improve your health in many surprising ways. Paul Kennedy highlights five signs that you may need physiotherapy.
Last updated Thursday 3 September 2020
https://www.nuffieldhealth.com/article/5-signs-you-may-need-physiotherapy
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 19
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
7 COMMON TYPES OF BACK AND SPINE PAIN… by barmac5 – BACK PAIN BLOG UK… May 14, 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.”
http://backpainbloguk.com/2021/05/10/reflexology-as-a-treatment-for-fibromyalgia/
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!
64 Regions of the Genome That Increase Risk for Bipolar Disorder Identified | Neuroscience News May 17, 2021
Source: Mount Sinai Hospital
Researchers have identified 64 genomic regions that contain genetic variants associated with an increased risk of developing bipolar disorder. The study also revealed a genetic overlap between bipolar disorder and other psychiatric disorders.
https://neurosciencenews.com/bipolar-genetic-regions-18436/
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.
How to manage your blood pressure at home – Heart Matters
If you’ve been diagnosed with high blood pressure, we’ve got the support you need, from buying a monitor, to measuring it yourself and how to reduce it.
https://www.bhf.org.uk/informationsupport/support/manage-your-blood-pressure-at-home
https://www.bhf.org.uk/informationsupport/support/manage-your-blood-pressure-at-home
EMJ
Explore our dedicated COVID-19 pages
Out Now: New Issue of EMJ Radiology
An open-access eJournal that provides healthcare professionals with peer-reviewed articles written by experts, exclusive interviews, and highlights from the European Congress of Radiology (ECR) 2021. These are accompanied by abstract summaries of presentations from the congress.
DAILY UPDATE on COVID-19 via EMJ > European Medical Journal on paper.li
EMJ reviews all of the breaking news from the major healthcare congresses across Europe and North- America. Subscribe for updates
NEW ISSUE OF GOLD OUT NOW!
Subscription is required
Sarepta touts clean data for commercial grade Duchenne gene therapy, clearing key hurdle to PhIII | Endpoints News – May 18, 2021
Amber Tong – Senior Editor Endpoints News
“After a trial flop and an unexpected detour, Sarepta says its gene therapy for Duchenne muscular dystrophy looks ready to get back on the Phase III track.”
https://endpts.com/sarepta-touts-clean-data-for-commercial-grade-duchenne-gene-therapy-clearing-last-hurdle-to-phiii/
Sourced via: John Carroll — Endpoints News 18 May | Subscription may be required
Endpoints News
Essential biopharma news and analysis
Independent journalism since 2016
#chronicillnessVOICE May 19
Health, Medical, Research, Patient and Pharma related newsletters
A selection of self-updating Health, Medical, Research, Patient and Pharma related paperli newsletters for everyone #notjustpatients. Addressing issues regarding health and medical wellbeing, chronic and rare diseases, clinical research, pharma industry and drug development.
The above post includes a link to our very own The #chronicillnessVOICE Daily newsletter for everyone #notjustpatients paper.li
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EVENTS & WEBINARS
Making the Unseen Seen ARDEnt Report – CRDN EVENT
If you missed> MAKING THE UNSEEN SEEN: Rare Disease and the impact of the COVID19 pandemic.
Event by Cambridge Rare Disease Network (CRDN) and Niemann-Pick UK (NPUK)
You can access the recording below
- Please find the webinar recording here
- The presentation slides from the webinar here
- The full ‘Making the Unseen Seen’ report for download here
“CRDN collaborated with Medics 4 Rare Diseases and Rare Revolution Magazine to bring together a cross sector group of experts and advocates newly named ARDEnt (Action for Rare Disease Empowerment) to produce a report called “Future Proofing Rare Disease Care, Research, and Treatment.”
Organiser of Making the Unseen Seen ARDEnt Report
#impactofcovid19 #rarediseases #empowerment #healthcare #report #raredisease #rare2021
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
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
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 19
Raise your #chronicillnessVOICE
Campaigns
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:
https://checkrare.com/may-is-huntington-disease-awareness-month/
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.”
OVER THIRTEEN HEALTH RELATED AWARENESS DAYS, WEEKS AND FOR THE MONTH OF MAY 2021… | VIA BACK PAIN BLOG UK… barmac5
BACK PAIN BLOG UK IS A PERSONAL JOURNEY OF A CHRONIC BACK PAIN SUFFERER. MY SITE IS FULL OF THE LATEST TREATMENTS, PRODUCT REVIEWS, THERAPIES, DRUGS, TIPS AND WEBSITES ON BACK PAIN, FIBROMYALGIA and ARTHRITIC CONDITIONS. BLOG AT WORDPRESS.COM.
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 May 19, YOUR SUPPORT IS GREATLY APPRECIATED
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