A simple goal of signal boosting rare and undiagnosed patient and community messages. August week long event, joining allies, advocates, small and large non-profit organisations, and others who wish to elevate rare and undiagnosed voices.… Read More Dazzle4Rare 2021 – #StrutYourStripes with us at ZebraStrutters to raise awareness!
Bringing a varied selection of health news, medical news, pharma news, research news to you in relation to many aspects within the healthcare, medical healthcare & pharmaceutical landscapes.
… Read More #chronicillnessVOICE May 20 health, medical, pharma and research news
Bringing a varied selection of health news, medical news, pharma news, research news to you in relation to many aspects within the healthcare, medical healthcare & pharmaceutical landscapes.
… Read More #chronicillnessVOICE May 19 health, medical, pharma and research news
Bringing a varied selection of health news, medical news, pharma news, research news to you in relation to many aspects within the healthcare, medical healthcare & pharmaceutical landscapes.… Read More #chronicillnessVOICE May 15 health, medical, pharma and research news
Read this to learn about FibroFlutters, who we are today. A Patient Advocacy Organisation & online social media communications network for everyone #notjustpatients… Read More About FibroFlutters
Raising awareness of Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders… Read More Ehlers Danlos Syndrome resources. Where to find information and support.
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
It was easy to notice the fact my mobility wasn’t as stiff; pain was lesser than usual, and I wasn’t getting numbness with pins and needles as much in my hands and feet. … Read More Cannacares CBD gel capsules Product Review – (sponsored)
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
