Category: patient centricity

My experience – First face-to-face event in 2 years!

Post author By fibrofly73
Post date November 14, 2021
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This week I was lucky enough to attend the ‘Patient Centricity and Collaboration Global Congress 2021, Europe, that was held in London on 8-9th November. By Paradigm Global Events, that was held in London on 8-9th November. The last time I attended such an event in person was in October 2019, in London. In this article I discuss it, my experience and share the messages that I took with me.

Tags #notjustpatients., Advocacy, Carole Scrafton, chronic illness, collaboration, Drug development, event summary, Face to face meeting, multi stakeholders, Paradigm Global Events, patient centricity, Patient Engagement, patient voice, Patients, PFMD, rare disease, Research

Awareness campaigns, events, blogs, petitions & posters chronic illness EVENTS Health and medical Healthcare Industry & business matters medical Partnerships Patient Advocacy patient centricity Patient Engagement Patients pharma Pharma / Science / Tech / Digital / AI Rare Twitter Feed Webinar

Patient Engagement Day with Prime Patient – Did you miss it?

Post author By fibrofly73
Post date September 27, 2021
1 Comment on Patient Engagement Day with Prime Patient – Did you miss it?
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Patient Engagement Day with Prime Patient – Did you miss it?
UPDATED to include an article by Olivia Kersey, Patient Strategist, at PEP Talks, which outlines the highlights of the very first annual Patient Engagement Day.

Tags #AmplifyThePatientVoice, chronic illness, Drug development, invisible illness, Patient Engagement, Patient Engagement Day, Patient interviews, Patient partnerships, patient voice, Prime Global People, rare disease, Research

Awareness campaigns clinical trials Drug development Educational patient centricity Patient Engagement pharma Research Sites to visit

Patient Engagement With Patient Focused Medicine Development

Post author By fibrofly73
Post date September 23, 2021
1 Comment on Patient Engagement With Patient Focused Medicine Development
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The PFMD network is making sure to aggregate existing knowledge and tools, identifying good practices and coherently combining them before designing accessible and useful avenues for the various audiences that will use them.

Tags #notjustpatients., Clinical research, Drug development, Educational, Learning hub, Made with patients, multi stakeholders, Network, Patient Engagement Management, Patient Focused Medicines Development, patient voice, PEM Suite, PFMD, Pharma / Science / Tech / Digital / AI, Research, research and development, toolkits, Trainings

Academics Awareness campaigns, events, blogs, petitions & posters Biomedical scientists Biotechnology Cell & Microbiology Child health clinicians conference Diagnosticians Drug development EVENTS Geneticists Health and medical Health Care Providers Healthcare Lab Technicians Media Partners medical Medical news stories, blogs and research Medical specialists / consultants Medical technologists Mens health Patient Advocacy patient centricity Patient Engagement Patients Pharma Pharma / Science / Tech / Digital / AI Precision Medicine Professionals Researchers

Precision Medicine Forum PATIENT WEEK – Change of date.

Post author By fibrofly73
Post date September 18, 2021
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Precision Medicine Forum – Patient Week convenes healthcare professionals, researchers, industry, payers and patients/patient advocates in a unique setting which puts the patient front and centre of the discussions. This time around there will be panels sessions, roundtables, 1-2-1 networking and group networking sessions.

Tags #PMFPatientWeek, Clinical reserach, Healthcare, innovation, medical & healthcare industry, medical professionals, Medical Research, Patients, pharma, Precision Medicine Forum, Research

#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

#Innovation chronic illness clinical trials conference Drug development Educational EVENTS FibroFlutters Media Partners patient centricity Patient Engagement Patients Pharma pharma Pharma / Science / Tech / Digital / AI Professionals Research Supporters / Ambassadors

Clinical 2021 on 7-9 April | Reuters Events Pharma

Post author By fibrofly73
Post date March 29, 2021

It is a great pleasure to let you know that I’m going to be co-hosting a roundtable with Dr. Oleksandr Gorbenko at Reuters Events Clinical 2021, 7-9 April. We’re excited to be speaking on the implementation of patient engagement in post-pandemic early phase R&D at Clinical 2021. The premise for this roundtable has come from […]

Tags clinical trials, digital transformation, Diversity Equity Inclusion, Drug development, future of pharma, hybrid trials, medical affairs, Patient Advocacy, real world evidence, Register Now, Roundtables, trial design, virtual event

Awareness campaigns, events, blogs, petitions & posters chronic illness Drug development Health Care Providers Mainly Medications Medical Conditions / Disorders Medical news stories, blogs and research Patient Advocacy patient centricity Patient Engagement Patients Pdf Download Available pharma Professionals public health Research

Call for action: As patients and HCP’s please give your input on patient information leaflets (PIL) and medicine guides

Post author By fibrofly73
Post date September 29, 2020

your input will help us understand the needs, challenges and expectations regarding this important information, co-create tools to increase patient involvement in the development of patient information leaflets

Tags Call for action, Give feedback, Healthcare Professionals, medical information, medicine development, Medicine Guides, Patient Engagement, Patient Information Leaflets (PIL), Patients, Patients as partners, Surveys

#Innovation AI in medicine chronic illness clinical trials conference Deep learning Digital Health Drug development EVENTS genetics genomics Healthcare Machine learning Media Medical Conditions / Disorders Patient Advocacy patient centricity Patients pharma Pharma / Science / Tech / Digital / AI Professionals Rare rare genetic disorder Research Therapies and Treatments

There’s still time to REGISTER for this conference on RARE DISEASE AND ORPHAN DRUGS 1 – 2 October

Post author By fibrofly73
Post date September 26, 2020

The goal of this Conference is uniting all well-known clinical researchers, biotech professionals, Medical Advisories, Academicians and decision makers to discuss possible ways to accelerate orphan drug development and access to rare disease patients, including the introduction of recent technologies and products to help aid the access of orphan drugs

Tags Data Bridge Market Research, Federated Data Solutions, Orphan drug development, patient advocates, Patient Perspective, patient voice, precision medicine, rare disease, The Future Of Rare Diseases, virtual event

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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