Tag: rare diseases

Real World Evidence Live: Rare Diseases & Innovative Therapies

Post author By fibrofly73
Post date March 21, 2022

Real-World Evidence 2022: Rare Diseases and Innovative Therapies will unite healthcare stakeholders to discuss and advance agile strategies for accelerating collaboration and patient focus in a post-COVID Europe.

Tags academia, agile strategies, Drug development, Early Bird, innovative therapies, medical & healthcare industry, pharma, post covid, rare diseases, rare drug development, real world evidence, Regulations and Compliance, RWE LIVE 2022, The Evidence Base

Care givers Child health chronic illness Drug development FibroFlutters Health and medical Healthcare Join the Community medical Medical Conditions / Disorders Medical news stories, blogs and research Partnerships Patient Advocacy Patient Engagement Patients Product Reviews Rare Rare Disease Advocacy Research Survey Therapies and Treatments Twitter Feed

Voice your opinions to improve medical products and services

Post author By fibrofly73
Post date September 13, 2021
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Rare Patient Voice connects patients and family caregivers with confidential research studies and surveys. Their studies and surveys are opinion based and are all about the patients and caregivers experience to help improve treatments, products, and services.

Get paid to Voice your opinions. Help companies develop better products and services to help provide better healthcare for patients. Create better patient outcomes!

Tags caregivers, chronic illness, clinical, Disability, get paid for your experiences, Give feedback, Healthcare, invisible illness, medical & healthcare industry, patient experience, patient voice, Patients, rare diseases, Research, share your story, voice your opinion

Articles Awareness campaigns, events, blogs, petitions & posters Blogs / Bloggers chronic illness EVENTS Health and medical Info site Medical Conditions / Disorders Medical news stories Medical news stories, blogs and research Neuroscience Newsletters Newsletters/Papers/Magazines/Blogs Patients Pharma / Science / Tech / Digital / AI Professionals public health

#chronicillnessVOICE June 21 health, medical, pharma and research news

Post author By fibrofly73
Post date June 21, 2021

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.

Medical news stories, blogs and research

#chronicillnessVOICE June 14 health, medical, pharma and research news

Post author By fibrofly73
Post date June 15, 2021
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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.

Tags #chronicillnessVOICE, #EPFCongress2021, #notjustpatients, 3D printed medtech, ARDEnt Report, Artificial Intelligence, Assistive tech, Biomedical technology, biopharma, Bipolar Disorder, blood pressure, body image, Cardiovascular disease, child mental health, Chronic blogs, Chronic Fatigue, chronic illness, chronic pain, Congenital and Genetic Conditions, covid 19 news, Dementia, Digital Health, Drug development, Drug repurposing, EDS, EMJ GOLD, EMJ Radiology, emotional regulation, Fibromyalgia, gene therapy, Global Health, Gluten Free, grief and anxiety, health, health inequity, health tech, Healthcare, Healthcare IT, Heart Health, Machine learning & AI, Med tech, MedComms, Medical news, Medical Research, men's mental health, mental health, Metabolic Disorders, migraines, MS, Neuroscience, Parkinsons, patient consent, Patientcentricity, Patients, pharma, psychology, public health, rare diseases, rare drug development, Recipes, remote patient monitoring, Research, Robotics, Science, sleep and pain, SMA, spinal cord injury, Summer activities, The Celiac Scene, Wales Gene Park, Wales healthcare, wearables

Articles Awareness campaigns, events, blogs, petitions & posters Charities chronic illness EVENTS Health and medical medical Medical Conditions / Disorders Medical news stories Medical news stories, blogs and research Newsletters/Papers/Magazines/Blogs Patient Advocacy Patients Pharma / Science / Tech / Digital / AI Professionals Sites to visit

#chronicillnessVOICE June 1 health, medical, pharma and research news

Post author By fibrofly73
Post date June 2, 2021

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.

Tags #chronicillnessVOICE, #EPFCongress2021, #notjustpatients, ARDEnt Report, Artificial Intelligence, Assistive tech, Biomedical technology, biopharma, Bipolar Disorder, blood pressure, Bowel function, Cardiovascular disease, Chronic blogs, Chronic Fatigue, chronic illness, chronic pain, covid 19 news, Decentralised trials, Digital Health, Drug development, Drug repurposing, EDS, EMJ GOLD, EMJ Radiology, exoskeleton, Fibromyalgia, gene therapy, Global Health, Global Year About Back Pain, Gluten Free, Gluten-free, Google, health, health inequity, health tech, Healthcare, Heart Health, IASP, Kessler Foundation, Machine learning & AI, Med tech, MedComms, Medical news, Medical Research, mental health, migraines, MS, Neuroscience, Patients, pharma, Plantar Fasciitis, public health, rare diseases, rare drug development, Recipes, Research, Robotics, Science, spinal cord injury, The Celiac Scene, Wales Gene Park, Wales healthcare, wearables

Awareness campaigns Health and medical Medical news stories, blogs and research Patient Advocacy Patients Rare Rare Disease Advocacy Supporters / Ambassadors Webinar

ARDEnt Report – Rare Disease and the impact of the COVID19 pandemic.

Post author By fibrofly73
Post date May 21, 2021
1 Comment on ARDEnt Report – Rare Disease and the impact of the COVID19 pandemic.
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“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.”

Tags ARDEnt Report, Cambridge Rare Disease Network, Healthcare, impact of covid19, Making the unseen seen, Medics4RareDiseases, patient empowerment, rare diseases, Rare Revolution Magazine

AI in medicine Alternative / Complementary Therapies & Treatments Articles Awareness campaigns, events, blogs, petitions & posters Bi-polar Biotechnology Blogs / Bloggers Cell & Microbiology Charities chronic illness chronic pain Diabetes Digital Health Drug development EDS EDS news and info Endocrinology Epilepsy EVENTS Fibromyalgia genomics Global resources Health and medical Heart Health HYPERMOBILITY Hypermobility Spectrum Disorders Machine learning medical Medical Conditions / Disorders Medical Device Medical news stories Medical news stories, blogs and research migraines Molecular & Computational biology Musculoskeletal Neuroscience Newsletters/Papers/Magazines/Blogs Patient Advocacy Patients Pharma / Science / Tech / Digital / AI physiotherapy Professionals public health Rare Research Sites to visit Therapies and Treatments Video Webinar

#chronicillnessVOICE May 20 health, medical, pharma and research news

Post author By fibrofly73
Post date May 20, 2021

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.

AI in medicine Alternative / Complementary Therapies & Treatments Articles Awareness campaigns, events, blogs, petitions & posters Bi-polar Blogs / Bloggers Charities chronic illness chronic pain Dementia / Alzheimers Digital Health Drug development EDS EDS news and info EVENTS Fibromyalgia genomics Global resources Health and medical Heart Health HYPERMOBILITY Hypermobility Spectrum Disorders Medical Conditions / Disorders Medical Device Medical news stories Medical news stories, blogs and research migraines Musculoskeletal Neuroscience Newsletters/Papers/Magazines/Blogs Patients Pharma / Science / Tech / Digital / AI physiotherapy Professionals public health Rare Research Sites to visit Therapies and Treatments Video Webinar

#chronicillnessVOICE May 19 health, medical, pharma and research news

Post author By fibrofly73
Post date May 19, 2021

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.

Tags #chronicillnessVOICE, #notjustpatients, Alzheimers, ARDEnt Report, Artificial Intelligence, Assistive tech, Autism spectrum disorders, Biomedical technology, biopharma, Bipolar Disorder, blood pressure, Cardiovascular disease, Chronic blogs, Chronic Fatigue, chronic illness, covid 19 news, cyber attack, Dementia, Digital Health, Diseases, Drug development, EDS, EMJ GOLD, EMJ Radiology, Fibromyalgia, Frontline Genomics, gene therapy, Global Health, Gluten Free, Google, health, health tech, Healthcare, Heart Health, Irish Healthcare, Med tech, migraines, Patients, PCORI, pharma, public health, rare diseases, rare drug development, Research, Robotics, Samsung, Science, Stem Cell treatment, Syndromes, Testicular cancer, Wales healthcare, wearables

#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

Post author By fibrofly73
Post date May 16, 2021

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.

Awareness campaigns, events, blogs, petitions & posters Care givers Charities chronic illness Chronic SoMe platforms clinical trials Drug development EDS FibroFlutters HOME Join the Community Medical Conditions / Disorders Patient Advocacy patient centricity Patient Engagement Patients pharma Pharma / Science / Tech / Digital / AI Professionals Rare Research Support Group Youth matters

It is time to ‘dazzle’, ‘strut your stripes’ and share ‘rare voices’ for #dazzle4rare2020! 9 – 14th August

Post author By fibrofly73
Post date August 9, 2020

Many rare disease communities are very small which makes it hard to raise awareness by themselves, so through joining forces during this week their voices are strengthened in numbers and become one giant ‘united voice’ for rare disease awareness.

Tags #dazzle4rare, #dazzle4rare2020, Awareness Campaign, Health Advocacy, Patient Advocacy, patient experience, Patient Organizations, patient voice, rare diseases

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