Looking for a local support group then please sign up for a basic membership to become a member, it’s free and you get access to their magazine ‘Fragile Links’.… Read More Ehlers-Danlos Syndrome Awareness in the Month of May
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
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.… Read More Freshly updated Selected Newsletters from News Medical
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?
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
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?!
In this video Dr. Weinreb discusses the fact that as we learn more about diseases and illnesses, and their subtypes, that it is “becoming common for clinical trials to be more focused on small subsets of a disease to better target the therapy.”… Read More How Clinical Trials Are Evolving | CheckRare.com
“For 2019, we have a practical focus on transforming the whole pipeline – R&D, clinical trials and commercial – demonstrating how patient-led design can reduce cost whilst driving effectiveness and value.”… Read More I’m speaking at the @eyeforpharma PATIENT SUMMIT EUROPE | Pharma’s home for patient-centricity in Europe
The burning question now 14 months on from that is how are FibroFlutters representing and engaging with ‘all-stakeholders’ themselves. After all it really would be rude of us to demand the industry to respect such a notion and for us not to return the favour and do it ourselves. … Read More Fibroflutters #SocialMedia #healthadvocacy and #allstakeholder approach to #healthcare, across the globe – Peeking at the statistics!
Hello and welcome to this eyeforpharma event special where I share with you the upcoming conferences in Philadelphia – North America and in London – Europe, during October 2019 Many people possibly will wish to know why I champion eyeforpharma, and indeed pharma in general so I’ll go into it, ‘briefly’, here before introducing the… Read More What’s coming up? #pharma #patients @eyeforpharma? Take a look & see! (sponsored)
