Category: Care givers

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

#Innovation Awareness campaigns, events, blogs, petitions & posters Care givers Drug development EVENTS Health and medical Healthcare Industry & business matters Media Partners medical Medical Conditions / Disorders Medical news stories, blogs and research Patient Advocacy patient centricity Patient Engagement Patients pharma Professionals Rare Rare Disease Advocacy rare genetic disorder Researchers Scientists Supporters / Ambassadors Twitter Feed

RARE Summit 21 – it’s more than an event – it’s where the magic happens!

Post author By fibrofly73
Post date September 12, 2021
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We're supporting RAREsummit21 #StrongerTogether

RAREsummit is more than an event – it’s where the magic happens. A powerful movement for change that provides the right ingredients and ecosystem for a better future, where productive collaborations are nurtured and flourish for real patient impact.

Tags #RAREsummit21, Cambridge Rare Disease Network, chronic illness, Disability, Healthcare Professionals, invisible illness, medical & healthcare industry, Patient Advocacy, Patient Engagement, patient experience, patient voice, pharma, rare disease, Rare Disease Advocacy, Rare disease awareness, rare drug development, Research, virtual event

Awareness campaigns, events, blogs, petitions & posters Care givers chronic illness Join the Community Medical Conditions / Disorders Medical news stories, blogs and research Mens health mental health Patient Advocacy Patients Rare Rare Disease Advocacy

Rare Disease Male Support Group – mental health community support.

Post author By fibrofly73
Post date August 29, 2021
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Great opportunity to get together with other guys that have rare diseases and mental health issues.
Meet in a safe space, talk about what you are going through and offer support to each other if and where needed.

Tags Community Support, health support groups, male support network, Mens helth, mental health, mental health matters, Positive thinking, Rare disease event, Support Group, Time To Talk

Articles Awareness campaigns Awareness campaigns, events, blogs, petitions & posters Blogs / Bloggers Care givers chronic illness Drug development EDS EVENTS Fibromyalgia Health and medical medical Medical Conditions / Disorders Medical news stories Medical news stories, blogs and research Neuroscience Newsletters Patient Advocacy Patients pharma Pharma / Science / Tech / Digital / AI Professionals public health Rare Disease Advocacy Research

#chronicillnessVOICE May 7 health, medical, pharma and research news

Post author By fibrofly73
Post date May 10, 2021
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#chronicillnessVOICE May 7 – health, patients, medical, research, pharma related news for everyone #notjustpatients #chronicillnessVOICE May 7: 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 […]

Tags #chronicillnessVOICE, #notjustpatients, 2021 RARE Drug Development Symposium, Artificial Intelligence, awareness, biopharma, Cardiovascular disease, Chronic Bloggers, chronic illness, chronic pain, Clinical research, covid 19 news, Deep Vein Thrombosis, Digital Health, Disability Awareness, Drug development, Ehlers Danlos Syndrome, EMJ, EMJ Radiology, EMJ reviews, FibroFlutters, Fibromyalgia, genetics, Global Genes, Global PNH Patient Registry, Health Advice, Health and wellness, health IT, Health related news, health tech, Healthcare Dive: IT, healthcare industry, healthy eating, Immune system, Lyme Disease, Med tech, Medical news, MedicineNet, mental health, mindfulness, nanotechnology, Neuroendocrine Cancer, Neuroscience, Neuroscience News, newsletters, NORD, Patients, pharma, Policy & Regulation, Radiology, rare disease, Science-X, sleep health, Ulcerative Colitis, VIRTUAL PUBLIC GENOMICS CAFÉ, wearables, Web MD, WordPress

AI in medicine Alternative / Complementary Therapies & Treatments Articles Awareness campaigns, events, blogs, petitions & posters Blogs / Bloggers Care givers chronic illness Deep learning Digital Health Disability Drug development EVENTS Fibro MeCFS online NEWS & INFO sources FibroFlutters genetics Global resources Health and medical Healthcare Industry & business matters Info site Machine learning medical Medical Conditions / Disorders Medical news stories Medical news stories, blogs and research Neuroscience Newsletters Newsletters/Papers/Magazines/Blogs Patient Advocacy Patients pharma Pharma / Science / Tech / Digital / AI Professionals public health Rare Rare Disease Advocacy rare genetic disorder Research Researchers Scientists Webinar

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

Post author By fibrofly73
Post date April 20, 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.

Alternative / Complementary Therapies & Treatments Care givers chronic illness chronic pain Disability EDS Fibro MeCFS online NEWS & INFO sources Fibromyalgia Health and medical Healthcare invisible illness Media medical Medical Conditions / Disorders Medical news stories, blogs and research mental health Newsletters Newsletters/Papers/Magazines/Blogs Pharma / Science / Tech / Digital / AI Professionals

Health, Medical, Research, Patient and Pharma related newsletters

Post author By fibrofly73
Post date February 20, 2021
6 Comments on Health, Medical, Research, Patient and Pharma related newsletters
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These newsletters update themselves so please remember to check in, and / or remember to opt-in for the newsletters via the links provided.

Awareness campaigns, events, blogs, petitions & posters Care givers Charities Child health chronic illness EVENTS Join the Community Medical Conditions / Disorders Medical news stories, blogs and research Patient Advocacy Patients Rare rare genetic disorder Sites to visit Support Group Webinar Youth matters

Are you aware of this #Rare? | Wolfram Syndrome UK Virtual Conference 2020 | 19th and 26th September

Post author By fibrofly73
Post date September 14, 2020
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Wolfram Syndrome is a rare genetic disorder which is also known as DIDMOAD syndrome after its four most common features: Diabetes Insipidus, Diabetes Mellitus, Optic Atrophy and Deafness

Tags DIDMOAD, Disease Awareness, Rare disease awareness, Rare disease event, rare genetic disorder, Wolfram Syndrome, Wolfram Syndrome UK

Awareness campaigns, events, blogs, petitions & posters Care givers chronic illness conference Drug development EVENTS HOME Medical Conditions / Disorders Patient Advocacy Patient Engagement Patients Patients included pharma Pharma / Science / Tech / Digital / AI Professionals Support Group

Almost there! Will you join us to talk about ‘Reaching patients and educating patients using agile social media strategies’?

Post author By fibrofly73
Post date September 12, 2020

#RegisterNow & join me at the
@RE_Pharma
#Pharma #Patient #Europe 2020
PATIENS CAN ATTEND FOR FREE
#Digital Conference & Expo
15-16 September
#pharma #patient #patientengagement #patientcentricity #REpharmaPatient #socialmediastrategy #DrugDevelopment #communications #clinicaltrials

Tags Clinical trial education, Clinical trial recruitment, communicating with patients, patient communities, pharmaceutical Industry, Regulations and Compliance, social media, Social media health community, social media networking, social media strategies

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

Academics Awareness campaigns Awareness campaigns, events, blogs, petitions & posters Care givers Charities chronic illness Chronic SoMe platforms clinical trials Disability Drug development eyeforpharma FibroFlutters FibroFlutters Home News Fibromyalgia Healthcare invisible illness Join the Community MAY 12TH Newsletters Patient Advocacy patient centricity Patient Engagement Patients Patients included pharma Pharma Professionals public health Rare Research Slideshows Support Group WEGO HEALTH

Reflecting back on 2020, come look at my advocacy! Then will you please, please, endorse me. #WEGOHealthAwards

Post author By fibrofly73
Post date July 30, 2020

Okay, let’s get on with it! The following information is to help give you reasons for why you should endorse Carole for #WEGOHealthAwards

Tags #WEGOHealthAwards, Awareness Campaign, Awareness Raising, chronic illness, clinical trials, collaboration, Community Network, Disease Awareness, Healthcare, Patient Advocacy, patient centricity, Patient Engagement, patient voice, rare disease, Social Media Network, WEGO HEALTH

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