#chronicillnessVOICE May 11 health, medical, pharma and research news

#chronicillnessVOICE May 11 – health, patients, medical, research, pharma related news for everyone #notjustpatients

#chronicillnessVOICE May 11:

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 11

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 11 – NEWS

Editors pick of the days newsletters

Study reveals new mechanism of lung tissue regeneration | Medical Xpress MAY 10, 2021

by   Perelman School of Medicine at the University of Pennsylvania

Credit: CC0 Public Domain


Sourced via Medicine and Health newsScience X

Not a plain language summary

More information: Cell Stem Cell (2021). DOI: 10.1016/j.stem.2021.04.026

Journal information: Cell Stem Cell

Soft sensors are first to comprehensively monitor pregnant women without wires | Medical Xpress

by Northwestern University

Not only are the soft, flexible wearable devices more comfortable for mothers, they also exceed the capabilities of monitoring systems currently used in top hospitals. Credit: Northwestern University

Not only are the soft, flexible wearable devices more comfortable for mothers, they also exceed the capabilities of monitoring systems currently used in top hospitals. Credit: Northwestern University


Sourced via Medicine and Health newsScience X Newsletter

More information: Dennis Ryu el al., “Comprehensive pregnancy monitoring with a network of wireless, soft, and flexible sensors in high- and low-resource health settings,” PNAS (2021). http://www.pnas.org/cgi/doi/10.1073/pnas.2100466118

Journal information: Proceedings of the National Academy of Sciences

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

This system helps robots better navigate emergency rooms | Tech Xplore MAY 10, 2021

by University of California – San Diego

The team trained the algorithm on videos from YouTube, mostly coming from documentaries and reality shows, such as “Trauma: Life in the ER” and “Boston EMS.” The set of more than 700 videos is available for other research teams to train other algorithms and robots. Credit: University of California San Diego


Sourced via: Technology newsScience X

More information:   Angelique M. Taylor et al. Social Navigation for Mobile Robots in the Emergency Department. cseweb.ucsd.edu/~lriek/papers/taylor-icra-2021.pdf

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

What Teeth and Gums Say About Your Health | MedicineNet

Reviewed By: Charles Patrick Davis, MD, PhD

Reviewed on 8/25/2020

See how diabetes, heart disease, osteoporosis, and other health problems are related to gum disease and oral health.


QUIZ: What Causes Deformity of the Joints With Arthritis? | MedicineNet

Reviewed By:  John P. Cunha, DO, FACOEP – Reviewed on February 6, 2017

Chronic inflammation caused by rheumatoid arthritis can lead to debilitating loss of cartilage, bone weakness…


Sign up for their FREE newsletters and get the latest health and medical information delivered direct to your inbox.

© 1996-2021 WebMD, LLC. All rights reserved.
Source slideshow on OnHealth

MedicineNet does not provide medical advice, diagnosis or treatment. See additional information.

#chronicillnessVOICE May 11

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

Have you experienced Compulsive Behaviors with Parkinson’s? BY SKRISCHER Twitchy Woman – My Adventures With Parkinson’s Disease

Neuroendocrine Tumour (VMT-𝛼-NET) programs Ronny Allan – Living with Neuroendocrine Cancer May 10 2021

Dignity by Abigail Johnston No Half Measures May 3, 2021

The Life Of My Mom My Rockin Disabled Life May 8, 2021

Lymphadenopathy by andie01322 Life of a Fibro Warrior May 5, 2021

May 12th is International Awareness Day for Fibromyalgia, ME / CFS & Lupus


“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!

New MRI Technique Can Detect Early Dysfunction of the Blood-Brain Barrier With Small Vessel Disease | Neuroscience News

DP-ASL, a new neuroimaging technique may help researchers identify early blood-brain barrier dysfunction associated with SVD.


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.

AI expected to supplant telehealth as top investment priority in next few years, survey finds | Healthcare Dive: IT

By Rebecca Pifer

Philips’ Future Health Index — surveying almost 3,000 health leaders worldwide — also found a surprising focus on delivering environmentally sustainable healthcare by 2024.

Image courtesy of Dollar Photo Club


Sourced via Healthcare Dive Weekender: 8 May 2021 (AMA: Physicians in independent practice now minority in US)

© 2021 Industry Dive

Think You Have Penicillin Allergy? You May Not May 3, 2021

By Marcia Frellick

Most people whose medical records say they are allergic to penicillin may not actually be, an allergist said Thursday during the American College of Physicians Internal Medicine Meeting 2021.

Image original source unknown


Medscape Medical News© 2021 WebMD, LLC. All rights reserved.

This tool does not provide medical advice. See additional information.

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

The company behind Moderna has a new RNA startup looking to disrupt drugmaking. The goal? 100 new drugs in 10 years – May 10, 2021

Kyle Blankenship – Managing Editor Endpoints News

Avak Kahvejian (Flagship Pioneering)

“Laronde, founded on science from Flagship general partner Avak Kahvejian and led by CEO-partner and former Vividion chief Diego Miralles, thinks eRNA could be the future of drugmaking, augmenting or replacing altogether standard drugs.”



Sourced via: John Carroll — Endpoints News 10 May | Subscription may be required

Endpoints News

Essential biopharma news and analysis
Independent journalism since 2016

#chronicillnessVOICE May 11

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

Scroll for other posts

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Real World Evidence Live: Rare Diseases & Innovative Therapies
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Making the Unseen Seen ARDEnt Report – CRDN EVENT

There is still time to register for this event TODAY > 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)

“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.” 

Join up for this webinar to learn about their latest findings

ARDEnt Group

Organiser of Making the Unseen Seen ARDEnt Report

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

Virtual Public Genomics Café

Friday 14 May 2021, 12 – 2pm

(this café is taking place as part of the Genomics Showcase)

The Café is free to join and will be an informal opportunity to meet others and find out about new advances in the area of genomic medicine in Wales. It will also be a chance for people to come together, and let us know how we can better support those affected by rare or genetic conditions.

The special café is being held as part of the first ever Genomics Showcase in Wales and will feature relaxed talks from speakers including:

  • Covid-19 a year on: Professor Keir Lewis, Hywel Dda University Health Board
  • Experiences of a Rare Disease Parent Advocate: Marie James
  • The Role of Rare Copy Number Variants in psychiatric disorders: Dr Kim Kendall, MRC Centre for Neuropsychiatric Genetics and Genomics, Cardiff University
  • Getting involved in Genomics in Wales: Patient & Public Sounding Board Members, Genomics Partnership Wales
  • Opportunity for discussion and networking

As the café is part of the Genomics Showcase, you will need to register for the via the specific link below. This will give you access to the entire Showcase (including talks, stands, activities, films and more) including the café.

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 

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.

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.

Advancing Research Through the Global PNH Patient Registry

May 12, 2021

1:00 – 2:00pm ET

The Global PNH Patient Registry is a collaborative effort between the Aplastic Anemia and MDS International Foundation (AAMDSIF), industry sponsors and the National Organization for Rare Disorders (NORD) to study paroxysmal nocturnal hemoglobinuria (PNH). It supports research, provides insight on treatment for the PNH community and helps understand the progression of PNH over time.

Register for this webinar to learn more about this patient registry.

NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 330 patient organization members, is committed to the identification, treatment ​and cure of rare disorders through programs of education, advocacy, research and patient services. rarediseases.org55 | Kenosia Ave, Danbury, CT 06810

2021 RARE Drug Development Symposium: Registration Now Open

Sign up for the 2021 RARE Drug Development Symposium

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

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

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

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

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

#chronicillnessVOICE May 11

Raise your #chronicillnessVOICE


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.”

EDS awareness




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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