Pigmented villonodular synovitis | Genetic and Rare Diseases Information Center (GARD) – an NCATS Program
Category: Rare
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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.… Read More Freshly updated Selected Newsletters from News Medical
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?
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?!
How Clinical Trials Are Evolving | CheckRare.com
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
I’m speaking at the @eyeforpharma PATIENT SUMMIT EUROPE | Pharma’s home for patient-centricity in Europe
“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
Fibroflutters #SocialMedia #healthadvocacy and #allstakeholder approach to #healthcare, across the globe – Peeking at the statistics!
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!
What’s coming up? #pharma #patients @eyeforpharma? Take a look & see! (sponsored)
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