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.
Category: Child health
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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
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 […]
Freshly updated Selected Newsletters from News Medical
Please note that medical information found on this website is designed to support, not to replace the relationship between patient and physician/doctor and the medical advice they may provide.
Today is #RareDiseaseDay – Read my Patient Experience: Living with multiple rare diseases | Pharmafile | What’s your #Rare? care to share?
Not everyone with EDS has hypermobility, and not everyone with hypermobility has EDS!
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
Reflecting back! My year of patient, health, research and pharma advocacy 2019 | Carole Scrafton
In all honesty I am amazed that I have done all this especially considering my health was quite bad last year. I do tend to distract myself as much as possible, but crikey, I got around quite a bit didn’t I. – closing thoughts
#RAREsummit19 | 23 September in Cambridge | I’m going, will you join us?!
Will you be joining us in supporting #RAREsummit19 on 23 September in Cambridge. A highlight on the rare disease calendar. Being an official media partner for this event is a great honour in the name of rare disease advocacy and I cannot wait to attend the event and be a part of the day’s activities. […]
Patients & Caregivers | American College of Rheumatology | Find information you need about rheumatic diseases & conditions.
Working in tandem with the Health Care Professionals is not easy for many patients, so it is important for the person that you care for to make their healthcare team aware that ‘you’ are their personal care-provider and support system.