Category: Support Group

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

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

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

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

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

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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… Read More About Us

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‘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.… Read More ‘What Patients Want’ Executive Round table Summary – eyeforpharma Patient Summit October 2019

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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… Read More NOT LONG NOW! eyeforpharma Barcelona 2020. Take a look at the agenda! BONUS Q&A re: patient centricity with Paul Simms

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