Many rare disease communities are very small which makes it hard to raise awareness by themselves, so through joining forces during this week their voices are strengthened in numbers and become one giant ‘united voice’ for rare disease awareness.… Read More It is time to ‘dazzle’, ‘strut your stripes’ and share ‘rare voices’ for #dazzle4rare2020! 9 – 14th August
Pages: 1 2 3 4 5 6 Page 1
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
It is time to pat yourselves on the back for being actively involved to help create change.… Read More Merry Christmas, happy holidays & all the best for 2020. Thank you for your support.
Our loyalty has remained since 2014 and as a result today on our fifth birthday I ask you to please help us to support their 2019 International Awareness Day Campaign by ‘becoming Fibromyalgia Aware’. Please visit the website to learn about the condition, but also learn about the work that the charity does in support of research and education.… Read More May 12th International Fibromyalgia Awareness Day – Happy 5th Birthday FibroFlutters
“what a confusing argument for an onlooker from ‘pharma’ who wanted to know ‘who to trust’ as a patient expert when they’re witnessing different types of ‘patient-expert’ arguing about what constitutes one.”
~ CAROLE, OWN OPINION!… Read More Updated Version! New Look! | #chronicillnessVOICE | SPECIAL EDITION | eyeforpharma Patient Summit Europe ~ My experiences, incl. Im-patient | Carole Scrafton
This meeting is also for our Fibromyalgia members and Fibromyalgia Action UK supporters as an extra meeting on top of our sister FMA UK Fibromyalgia group’s meeting on the FIRST MONDAY OF THE MONTH which our members are welcome to Join.… Read More Home news | Next meet up is on 20th November
Feedspot is the content reader for reading all your favorite websites in one place.
Read your favorite Blogs, News websites, RSS Feeds, Youtube Channels and Social sites accounts from one place on Feedspot.
Using a content reader helps you keep up with your top information sources – content comes straight to you, saving you the time to go and check every site on your own.
Feedspot also keeps track of which items you’ve read, so you only see the unread items when you come back, even when you login on different devices.… Read More FibroFlutters is recognised again by Feedspot |Top 10 placing #chronicillness
September is Pain Awareness Month
90% of EDS patients live with some form of pain, but all experience this pain in a different way. Follow us on social media throughout the month for information, discussion, and support on the many aspects of EDS and HSD pain. #myEDSHurts #myHSDHurts
THE EHLERS-DANLOS SOCIETY EDS & RELATED DISORDERS GLOBAL REGISTRY… Read More CONNECT: Pain Awareness Month, Zebra Strong Tour, and more! | The Ehlers-Danlos Society | 11 September 2018