Raising awareness of Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders
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.
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
#Pharma #Patient #Europe 2020
PATIENS CAN ATTEND FOR FREE
#Digital Conference & Expo
#pharma #patient #patientengagement #patientcentricity #REpharmaPatient #socialmediastrategy #DrugDevelopment #communications #clinicaltrials
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.
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.
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 […]
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.
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