Raising awareness of Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders
Category: Support Group
Some of you may be thinking ‘dance, I can’t do that because of my disabilities’. Well, I’ll be dancing from my sofa! For example, chair dancing, wheelchair dancing and any kind of dancing you can manage is fine.
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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
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
#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
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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
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.
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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
Okay, let’s get on with it! The following information is to help give you reasons for why you should endorse Carole for #WEGOHealthAwards
healtheo360 is a community where patients can connect with one another for support, inspiration, and motivation.
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About Us - FibroFlutters Awareness campaigns Charities Child health chronic illness chronic pain Chronic SoMe platforms Disability Drug development EDS news and info Educational EVENTS eyeforpharma Fibro MeCFS online NEWS & INFO sources FibroFlutters Home News Fibromyalgia FMAUK Healthcare HOME HYPERMOBILITY im-patient invisible illness JHS Join the Community MAY 12TH ME CFS Medical Conditions / Disorders mental health Miscellaneous & Other Neurology Newsletters Newsletters/Papers/Magazines/Blogs NIHR NIHR Clinical Research Network Patient & Public Involvement & Engagement Patient Research Ambassador Initiative Patient Advocacy Patients Patients included pharma Pharma / Science / Tech / Digital / AI Professionals Rare Research Skin conditions SoMe Platforms Support Group Twitter Twitter Feed WEGO HEALTH
About Us
Contents About Us – our aims and desires, missions and wants as a patient led group. Advocacy & raising awareness Advocacy & raising awareness (Continued from Page 2) – Including: Updated Version! New Look! | #chronicillnessVOICE | SPECIAL EDITION | eyeforpharma Patient Summit Europe ~ My experiences, incl. Im-patient | Carole Scrafton Is pharma being […]
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#Innovation AI in medicine Awareness campaigns, events, blogs, petitions & posters big data Biochemistry Care givers chronic illness conference data privacy data silos Deep learning Digital Health Drug development EVENTS eyeforpharma FibroFlutters Health Care Providers Healthcare Lab Technicians Machine learning Media Medical Device Medical technologists Patient Advocacy patient centricity Patient Engagement Patients Patients included Pdf Download Available Pharma pharma Pharma / Science / Tech / Digital / AI Professionals public health Researchers Scientists Support Group Youth matters
‘What Patients Want’ Executive Round table Summary – eyeforpharma Patient Summit October 2019
This EXCLUSIVE PAPER ‘What Patients Want’ discusses the roundtables / interactive sessions that were designed + led by patients, co-chaired by patients, and moderated by industry facilitators ie patient advocates.
Categories
#Innovation Academics AI in medicine Articles Awareness campaigns, events, blogs, petitions & posters big data Biochemistry Biomedical scientists Care givers Child health chronic illness clinical trials conference data privacy data silos Deep learning Diagnosticians Digital Health Drug development EVENTS eyeforpharma FibroFlutters Geneticists genomics Health Care Providers Healthcare Lab Technicians Machine learning Media Medical Conditions / Disorders Medical Device Medical news stories Medical news stories, blogs and research Medical technologists Newsletters/Papers/Magazines/Blogs Patient Advocacy patient centricity Patient Engagement Patients Patients included pharma Pharma Pharma / Science / Tech / Digital / AI pharmaphorum Professionals Research Support Group Therapies and Treatments Webinar
NOT LONG NOW! eyeforpharma Barcelona 2020. Take a look at the agenda! BONUS Q&A re: patient centricity with Paul Simms
The more I think about it, the fact that data sits in silos and is in different formats is the thing that is preventing true patient centricity, because it’s what stops you determining whether intervention X actually created result Y within the population, and hence reward the right kind of behaviour.’
PAUL SIMMS, CHAIRMAN EYEFORPHARMA