#chronicillnessVOICE April 28 health, medical, pharma and research news

#chronicillnessVOICE April 28 – health, patients, medical, research, pharma related news for everyone #notjustpatients

#chronicillnessVOICE April 28:

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 April 28

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 April 28 – NEWS

Editors pick of the days newsletters

FDA to scrutinize unproven cancer drugs after 10-year gap | Medical Xpress

by Matthew Perrone, APRIL 25, 2021

The three-day meeting on drugs from Merck, Roche and Bristol-Myers Squibb is part of an industrywide review triggered by an “unprecedented level of drug development” in recent years, according to FDA officials.

This Dec. 10, 2020 file photo shows Food and Drug Administration building in Silver Spring, Md. Each year the U.S. approves dozens of new uses for cancer drugs based on early signs that they can shrink or slow the spread of tumors. But how often do patients actually live longer, more active lives? That seemingly simple question is, in fact, one of the thorniest debates in medicine. (AP Photo/Manuel Balce Ceneta)


Sourced via Medicine and Health newsScience X Newsletter Apr 25

Scientists cast new understanding of how skin repairs itself | Medical Xpress

by Mike Addelman, University of Manchester

Credit: Unsplash/CC0 Public Domain

University of Manchester scientists have cast new light on how our skin repairs itself, bringing the possibility of regeneration of the organ a step closer.

Credit: Unsplash/CC0 Public Domain


Sourced via Medicine and Health newsScience X Newsletter Apr 22

More information: Svitlana Kurinna et al. Interaction of the NRF2 and p63 transcription factors promotes keratinocyte proliferation in the epidermis, Nucleic Acids Research (2021). DOI: 10.1093/nar/gkab167

Journal information: Nucleic Acids Research , Nucleic Acid Research

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

First atomic model of human telomerase constructed by electron cryo-microscopy | Phys.org

Provided by University of Cambridge

Three-dimensional structure of the human telomerase holoenzyme, as determined by cryo-EM at 3.4-3.8 Å resolution. Credit: MRC Laboratory of Molecular Biolof

Excerpt: Telomeres act as a barrier to protect the genetic information from progressive degradation arising from incomplete DNA replication.

Three-dimensional structure of the human telomerase holoenzyme, as determined by cryo-EM at 3.4-3.8 Å resolution. Credit: MRC Laboratory of Molecular Biolof


Sourced via Biology newsScience X Newsletter Apr 22

More information:  George E. Ghanim et al. Structure of human telomerase holoenzyme with bound telomeric DNA, Nature (2021). DOI: 10.1038/s41586-021-03415-4

Journal information: Nature

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

Infectious Disease: Are These Historical Illnesses Coming Back? | MedicineNet

Reviewed By: Charles Patrick Davis, MD, PhD

We’ve made a lot of progress against illnesses like tuberculosis and scarlet fever. But more people seem to be coming down with these serious diseases.


Mental Health: Signs You’re Mentally Exhausted | MedicineNet

Reviewed By: Charles Patrick Davis, MD, PhD

Are you irritable, tired, and finding it hard to focus? You may be mentally exhausted. Learn the 11 signs and also 3 ways to feel better.


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 April 28

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

Generic Somatostatin Analogues for Neuroendocrine Cancer Ronny Allan – Living with Neuroendocrine Cancer April 22 2021

Enjoying Life’s Simple Pleasures: A Peaceful Moonlit Sky… and Gnats. Reflections with Terry April 22 2021

Say My Meme Is A Podcast That Describes Memes To Blind People Assistive Technology Blog April 19, 2021


Opinions Based On Feelings Are Surprisingly Stable by BPS Research Digest / Emily Reynolds – The British Psychological Society, April 19, 2021

When People Lie About You and Other Wrongs Leaders Experience by Dan RockwellLeadership Freak


Listening to Calming Music at Bedtime Promotes Better Sleep | Neuroscience News

Researchers also learned that listening to music for longer than four weeks is better at improving sleep quality than listening to music for a shorter length of time. Image is in the public domain

Older adults who listened to calming music before sleep, or while falling asleep, had better sleep quality than those who did not.


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.

Survey casts doubt on utility of wearable devices in healthcare | Healthcare Dive: IT

By Ron Shinkman

Courtesy of Amazon wearable devices in healthcare

Forrester’s report, based on interviews with doctors, patients and vendors, suggests data gaps and physician skepticism of the popular products is too high for widespread adoption, although design changes could remedy that.

Image courtesy of Amazon


Sourced via Healthcare Dive: IT Newsletter Apr 22 (Doctors doubt clinical uses of wearables)

© 2021 Industry Dive

Warning Signs of Ulcerative Colitis | Slideshow

Reviewed by Arefa Cassoobhoy, MD, MPH on July 27, 2020

UC is a bowel disease that causes inflammation of the cells lining your large intestine. This may lead to sores that can bleed and keep your body from digesting food like it should. Here’s what to watch for.

Image by VEM/Photo Researchers


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

Eli Lilly abandons its plans to pitch its blockbuster contender mirikizumab for psoriasis after sizing up heavyweight rivals | Endpoints News

“Tucked away in their Q1 release today, Lilly said essentially that they had concluded the drug didn’t make the grade in psoriasis after all, and instead of multiple filings, there would be none for psoriasis. Anywhere.”

Eli Lilly abandons its plans to pitch its blockbuster contender mirikizumab for psoriasis after sizing up heavyweight rivals | Endpoints News – John Carroll (R&D)


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

Endpoints News

Essential biopharma news and analysis
Independent journalism since 2016

#chronicillnessVOICE April 28

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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About FibroFlutters
Read this to learn about FibroFlutters, who we are today. A Patient …


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 

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 April 28

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.”




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


Author FibroFlutters Logo are proud to be actively supporting the work of AIMed Embracing #AI in #Healthcare #Medicine.

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We are a Patient Advocacy Organisation & online social media communications network

FibroFlutters patient, health, clinical research, medical, pharma, digital health & AI advocacy.
Support and advice for people with chronic illnesses and rare disorders. Including, Pigmented Villondular Synovitis (PVNS), Ehlers-Danlos Syndrome (EDS), Hypermobility Spectrum Disorders (HSD’s), Fibromyalgia, Chronic pain disorders, Musculoskeletal conditions, Chronic Fatigue Syndromes / ME, and Mental Health.

We also have a Social media network for connecting multi-stakeholders from across the medical healthcare industries. It also provides us with a network for sharing information such as the latest research, news and events from a cross-section of areas within the medical healthcare industry.

We also have many other groups/pages/profiles across social media that we use to achieve our aims of Patient, Health, Research and Pharma Advocacy. They also give us the ability to provide advice and offer a friendly hand of support across many social media platforms. 

SLOGAN: #chronicillnessVOICE for everyone #notjustpatients


  • We are not medical professionals nor claim to be. Remember that you should always consult your doctor about any health problems and not solely rely on Dr Google, or on any information that you may read online through 3rd parties.
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Its A Doddle – Mapping the communities that care

By Mapping UK Charities, Community Projects, Groups & Organisations together we are creating a national resource for use at a local level. Check out our profile via this button below.

SYNAPSE / Patient Focused Medicines Development (PFMD) joined in 2019

Check out our profile to see what initiatives we’re involved in, what the work will involve and how diverse a group of people that we are collaborating with on improving patient engagement within clinical trials. Very different! Very exciting! Very Grateful!

Got something to share then don’t hesitate to get in touch with us. Also if you want to write for me in exchange for publishing privileges let me know via the e-mail link below.


FibroFlutters are continuously

Advocating for a Multi-Disciplinary approach to all aspects of medical healthcare. 
Using a model approach using all the ‘stakeholders’ and a patient’s perspective of what patient-centred care, patient-included, patient-involved, patient-centric should look like and involve, that’s everyone by the way!
You all need to pitch in!!

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FibroFlutters ~ CHRONIC, INVISIBLE AND RARE ILLNESS SUPPORT / ADVICE / ADVOCACY| Disclaimer | Privacy Notes | 8 May 2018

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