It is time to ‘dazzle’, ‘strut your stripes’ and share ‘rare voices’ for #dazzle4rare2020! 9 – 14th August

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

May 12th International Fibromyalgia Awareness Day – Happy 5th Birthday FibroFlutters

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

Updated Version! New Look! | #chronicillnessVOICE | SPECIAL EDITION | eyeforpharma Patient Summit Europe ~ My experiences, incl. Im-patient | Carole Scrafton

“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

FibroFlutters is recognised again by Feedspot |Top 10 placing #chronicillness

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

CONNECT: Pain Awareness Month, Zebra Strong Tour, and more!  |  The Ehlers-Danlos Society  |  11 September 2018

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