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

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

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!… Read More Today is #RareDiseaseDay – Read my Patient Experience: Living with multiple rare diseases | Pharmafile | What’s your #Rare? care to share?

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

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… Read More Reflecting back! My year of patient, health, research and pharma advocacy 2019 | Carole Scrafton

#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.… Read More #RAREsummit19 | 23 September in Cambridge | I’m going, will you join us?!

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.… Read More Patients & Caregivers | American College of Rheumatology | Find information you need about rheumatic diseases & conditions.

NOT LONG NOW! RCGP’s 7th Health and Justice Summit: Journeys Through Justice – Leadership and Transformation (sponsored)(updated)

The main title will be ‘Journeys Through Justice – Leadership and Transformation’ – focusing on a range of themes including Women in prison, Transgender pathways, Children’s services, Learning disability and difficulty and Trauma-informed care… Read More NOT LONG NOW! RCGP’s 7th Health and Justice Summit: Journeys Through Justice – Leadership and Transformation (sponsored)(updated)

Get to know about AI in Medicine with ‘AI Med’

Who are AI Med? AI Med are a clinician led community exploring how AI can be used in Medicine and was founded in 2014 by Dr Anthony Chang. Founder AIMed Chang is Chief Artificial Intelligence Officer, Children’s Hospital of Orange County (CHOC) Chang is a practising paediatric cardiologist, CIIO at CHOC children’s and world-renowned expert on artificial… Read More Get to know about AI in Medicine with ‘AI Med’