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?
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
Hello and welcome to this eyeforpharma event special where I share with you the upcoming conferences in Philadelphia – North America and in London – Europe, during October 2019 Many people possibly will wish to know why I champion eyeforpharma, and indeed pharma in general so I’ll go into it, ‘briefly’, here before introducing the… Read More What’s coming up? #pharma #patients @eyeforpharma? Take a look & see! (sponsored)
RARE Weekly TOP TIP | Keeping safe this winter
rarerevolutionmagazine ~ Healthcare Unblocked 2018 is the UK’s first flagship, must attend conference dedicated in advancing blockchain and Distributed Ledger Technology in healthcare.… Read More Rare Revolution Magazine | RARE Round-up 🌍 | 11 October 2018
Including:
How My ‘One Day at a Time’ Philosophy Helps Me Cope With Chronic Pain | by Samantha Moss on Trigeminal Neuralgia
12 Clothing Brands With Pain-Free Seams That Won’t Hurt Your Skin | by Paige Wyant on Chronic Pain
Confessions of People Facing Rare Disease: This Is Life | by Ashanthi De Silva on Rare Disease
When the Demands of Motherhood Almost Led to a Nervous Breakdown | by Amanda Lynch on Anxiety
Facing Disability as an Adult Who Wants to Work | by Alex Tomlinson on Migraine
Plus more…… Read More A selection of posts by chronic bloggers via The Mighty
#Migraine #TriggerFoods 3 Ways I’ve Eliminated Migraine Trigger Foods | JENNIFER | WORDPRESS blog: Weekly digest for The Migraine Mantras | 9 July 2018, Published 6 July 2018 Opening line: ‘Having Chronic Hemiplegic Migraine has taken a lot of things from me, but none has been more frustrating than some of the food I can no… Read More 3 Ways I’ve Eliminated Migraine Trigger Foods | JENNIFER | WORDPRESS blog: Weekly digest for The Migraine Mantras | 9 July 2018, Published 6 July 2018
Exciting new magazine for youths with #rareillness | The RARE Revolution – Youth Takeover is here!!!! – #RareYouthProject| 18 March 2018 ‘This magazine has been created and brought to you by the #RareYouthProject. Following a year long programme of work experience and mentoring, our team made up of children and young people aged 8-23 have created… Read More The RARE Revolution – Youth Takeover is here!!!! – #RareYouthProject
