After having constant dislocations in my knee where the PVNS tumour was removed from 6 years years previously had caused major damage. This was worsened with my hEDS which effects all of my joints. … Read More Pigmented Villonodular Synovitis (PVNS) our Co-Founder’s patient experience with ultra rare disease. #dazzle4rare2020
Okay, let’s get on with it! The following information is to help give you reasons for why you should endorse Carole for #WEGOHealthAwards… Read More Reflecting back on 2020, come look at my advocacy! Then will you please, please, endorse me. #WEGOHealthAwards
Bringing a varied selection of #healthnews #medicalnews #pharmanews #researchnews to you in relation to many aspects within the #healthcare #medicalhealthcare & #pharmaceutical landscapes. … Read More My favourite Health Medical Research Patient & Pharma related Paper.Li newsletters for everyone #notjustpatients | Self-Updating
During these extraordinary times, the most important thing Pharma can do is collaborate cross-functionally and cross-company.… Read More #COVID_19 won’t stop the #collaborating or #crossnetworking – JOIN US for FREE as eyeforpharma Philadelphia goes #Virtual
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
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?!
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.
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
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)
