April 14 #chronicillnessVOICE daily – health, patients, medical, research, #pharma related news for everyone #notjustpatients
April 14 #chronicillnessVOICE daily:
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
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.
Editors pick of the days newsletters
Everything you need to know about patient advocacy groups and clinical trials
Natasha Welford – Apr 12
Want to gain valuable insights from patients and caregivers? Partnering with patient advocacy groups could be a great option to explore. Interested in learning more? Then have a read of our latest blog, all about the benefits PAGs bring to clinical trials:
New artificial intelligence tool can help detect melanoma
04/05/2021 AIMed Artificial Intelligence in Medicine
“Using deep convolutional #neuralnetworks, researchers can quickly analyze wide-field images of patients’ skin in order to more efficiently detect #cancer”
Who are AIMed? Learn more here
FibroFlutters are are friends and supporters of AIMed
Check out this #Mayv: Chronic Voices interview by Nikki Albert
#interview #chronicpain #chronicillness
Nikki describes her experience with multiple chronic conditions in the questions below in our chronic voices series. Follow Nikki at @brianlessblogger on Instagram or on her website at brainlessblogger.net.
“Mayv is a supportive community of patients, doctors, and experts. It’s a place for us to share our collective experience and knowledge of chronic pain resources, so that we may all help each other transform a life of pain into a life of thriving. From chronic pain support groups to group mediations, our community is here is help!” Learn more about their mission here.
Explore our dedicated COVID-19 pages
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
People Want to Improve Mental Health by Exercising, but Stress and Anxiety Get In the Way – April 12, 2021
Sourced via Neuroscience News newsletter 13th April
Researchers also found economic disparities played a role, particularly among younger adults.
“Researchers say the COVID pandemic has created a paradox where mental health has both motivated and generated a barrier to people wanting to improve their physical health via exercise. The study found stress and anxiety are preventing many of those who want to exercise from embarking on physical activity.”
Study identifies two neuronal populations associated with symptoms of Parkinson’s disease | by Ingrid Fadelli , Medical Xpress
“Parkinson’s disease is a progressive neurodegenerative disorder that manifests itself through a diverse range of motor and non-motor symptoms, including shaking and stiffness of the limbs, as well as difficulties in maintaining balance and coordination, walking and talking. As the disease progresses, these symptoms typically evolve and become increasingly severe.”
More information: Divergent pallidal pathways underlying distinct Parkinsonian behavioral deficits. Nature Neuroscience (2021). DOI: 10.1038/s41593-021-00810-y Journal information: Nature Neuroscience
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.
EVENTS & WEBINARS
Meaningful technology: putting participants at the heart of research
Event by Sano Genetics
I’m attending this on 20th April will we see you there?
Engaging participants in biomedical research remains a huge challenge. Even with a coherent cross-channel communications strategy it remains hard to meaningfully engage with participants as individuals in a way that maintains their interest over time. For the last year, Genomics England and Sano Genetics have been working together to better understand how research participants can be placed at the heart of research by using a dedicated online platform.
UPCOMING INDUSTRY WEBINAR
Getting Care to Patients: a new paradigm
with Enable Injections
Wednesday, April 28 – 10am EST, 4pm CET
What is the Patient Engagement Open Forum
The Forum aims to facilitate collaboration and co-creation of real solutions for patients WITH patients while providing a holistic perspective of patient engagement, its landscape, and actors. Over the last years, it has become THE place for the patient engagement community to foster innovation, network, share practices, build trust, acceptance, and awareness.
This Thursday April 15th, join over 280+ participants for a joint workshop on the role of patients in #digitalhealth at the #PatientEngagement Open Forum 2021. A session that will explore key topics for the future of #precisionmedicine.
Event details, speakers info, and registration at https://synapse.pfmd.org/events/how-to-connect-patients-to-digital-health
Wales Gene Park just announced a new event
Young People’s Virtual Genomics Café > Wednesday, 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? Sign up for
Get your tickets via Eventbrite from 15th April when they go live.
These events are aimed at those aged 16 to 25 and are run by Wales Gene Park with Genomics Partnership Wales. May’s café will provide the opportunity to ‘Meet the Professional’ working in the area of genetics and genomics
Got an event, or webinar, you want to share send us an email with ‘please share this event’ in the subject line!
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.”
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, YOUR SUPPORT IS GREATLY APPRECIATED
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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Social and useful links
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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