#Innovation Articles Awareness campaigns Awareness campaigns, events, blogs, petitions & posters Blogs / Bloggers cancer celiac Charities chronic illness Drug development EDS EVENTS Fibromyalgia genomics Global resources Health and medical Healthcare Heart Health HYPERMOBILITY Hypermobility Spectrum Disorders Lyme Disease MAY 12TH ME CFS medical Medical Conditions / Disorders Medical news stories, blogs and research Medical specialists / consultants mental health Musculoskeletal Neurology Neuroscience Newsletters/Papers/Magazines/Blogs Patient Advocacy Patients pharma Pharma / Science / Tech / Digital / AI public health Rare Research Rheumatology Webinar

#chronicillnessVOICE May 15 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 15 – health, patients, medical, research, pharma related news for everyone #notjustpatients

#chronicillnessVOICE May 15:

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 15

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 15 – NEWS

Editors pick of the days newsletters

Bio-inspired scaffolds help promote muscle growth | Medical Xpress MAY 14, 2021

by   Rice University

Rice University bioengineers are fabricating and testing tunable electrospun scaffolds completely derived from decellularized skeletal muscle to promote the regeneration of injured skeletal muscle.

A sample of decellularized extracellular matrix created by Rice University bioengineers. The electrospun scaffolds can be used to regenerate injured muscles. The natural scaffold material degrades as new muscles take over. Credit: Jeff Fitlow / Rice University

Sourced via Medicine and Health newsScience 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

Transforming lung cells critical for pulmonary fibrosis | Medical Xpress

by Will Doss, Northwestern University

The failure of lung epithelial cells to complete transition from a stem cell-like state into a fully differentiated state causes lung fibrosis, according to a Northwestern Medicine study published in Proceedings of the National Academy of the Sciences (PNAS).

Scott Budinger, MD, the Ernest S. Bazley Professor of Airway Diseases and chief of Pulmonary and Critical Care in the Department of Medicine, and Alexander Misharin, MD, PhD, assistant professor of Medicine in the Division of Pulmonary and Critical Care, were co- senior authors of the study published in PNAS. Credit: Northwestern University

Sourced via Medicine and Health newsScience X Newsletter

More information: Satoshi Watanabe et al. Resetting proteostasis with ISRIB promotes epithelial differentiation to attenuate pulmonary fibrosis, Proceedings of the National Academy of Sciences (2021). DOI: 10.1073/pnas.2101100118

Ankit Bharat et al. Lung transplantation for patients with severe COVID-19, Science Translational Medicine (2020). DOI: 10.1126/scitranslmed.abe4282

Journal information: Proceedings of the National Academy of Sciences , Science Translational Medicine

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

How a slender, snake-like robot could give doctors new ways to save lives | Tech Xplore MAY 12, 2021

by Andrew Snook, University of Toronto Mississauga

Professor Jessica Burgner-Kahrs Credit: Nick Iwanyshyn

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 pilot plans for new national birth cohort study – UK Research and Innovation

Researchers are set to test innovative approaches to a major new UK-wide study that will follow babies born in the 2020s over many decades. The study will aim to understand how societal circumstances and events affect them.

A nurse is to a patient what a mother is to a childKevinMD Plus


Founded in 2004 by Kevin Pho, MD, is the web’s leading platform where physicians, advanced practitioners, nurses, medical students, and patients share their insight and tell their stories.

Does Blue Light Help Your Mood? | MedicineNet

  • Medical Author: Divya Jacob, Pharm. D.
  • Medical Reviewer: Pallavi Suyog Uttekar, MD

Medically Reviewed on 4/15/2021

Blue light has a short wavelength and a high amount of energy. Adequate exposure to the natural blue light is known to lift your mood, attention and reaction times during the day.

NEWS: Feeling Down? Support Via Social Media May Not Be Enough | MedicineNet

By Alan Mozes HealthDay Reporter
MONDAY, May 10, 2021 (HealthDay News)

Looking for a morale boost or some solid encouragement? If so, socializing the old-fashioned way — live and in-person — will likely do more to lift your spirits than online interactions, new research suggests.

Copyright © 2021 HealthDay. All rights reserved.

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 15

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

The Month of May – Awareness Days/Weeks By memyselfandchronicillness Me, Myself and Chronic Illness Blog 14 May 2021

Standing By You While You Wait By SamMy Medical Musings May 10 2021


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

Virginia Tech Launches ‘Next Generation’ Human Brain Imaging Lab| Neuroscience News

Source: Virginia Tech

Virginia Tech researchers have received a grant to deploy a new brain imaging technology called optically pumped magnetometry which can assist with studying the nuances of social interactions.

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.

10 tasty low-salt recipes – Heart Matters

Cutting down on the amount of salt we eat is an important change we can make to improve our heart health. Why not try some of these low-salt recipes to freshen up your menu without forgoing flavour?

British Heart Foundation is a registered Charity No. 225971. Registered as a Company limited by guarantee in England & Wales No. 699547. Registered office at Greater London House, 180 Hampstead Road, London NW1 7AW. Registered as a Charity in Scotland No. SC039426

COVID-19: Current global trends World Health Organization

Episode #38 – Current Global trends 12 May 2021 | Science conversation

What is data telling us about the spread of COVID-19 around the world? What does evidence tell us about transmission in populations that are vaccinated? WHO’s Dr Oliver Morgan explains in Science in 5 this week—current-global-trends

Working with 194 Member States, across six regions, and from more than 150 offices, WHO staff are united in a shared commitment to achieve better health for everyone, everywhere.

World Health Organization

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

Gene therapy from Biogen’s $800M buyout flops in mid-stage study, dealing blow to new ambitions – May 14, 2021

Jason Mast – Editor Endpoints News

“The #2 candidate from Biogen’s $800 million ocular gene therapy buyout has failed in a mid-stage trial, dealing an early blow to the big biotech’s plans to revitalize its pipeline with new technologies.”

Sourced via: John Carroll — Endpoints News 14 May | Subscription may be required

Endpoints News

Essential biopharma news and analysis
Independent journalism since 2016

#chronicillnessVOICE May 15

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 15

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.”

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!


ddf2ff PALE BLUE