Tag: rare disease

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Today is #RareDiseaseDay – Read my Patient Experience: Living with multiple rare diseases | Pharmafile | What’s your #Rare? care to share?

Not everyone with EDS has hypermobility, and not everyone with hypermobility has EDS!

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Reflecting back! My year of patient, health, research and pharma advocacy 2019 | Carole Scrafton

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

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What’s coming up? #pharma #patients @eyeforpharma? Take a look & see! (sponsored)

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 […]

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Rare Revolution Magazine |  RARE Round-up 🌍 |  11 October 2018

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.

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Blogs / Bloggers chronic illness chronic pain Chronic SoMe platforms Disability invisible illness Join the Community Medical Conditions / Disorders mental health Newsletters/Papers/Magazines/Blogs Poetry Rare Spoonie Talk

A selection of posts by chronic bloggers via The Mighty 

Photo by Negative Space on Pexels.com

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…

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Blogs / Bloggers chronic illness depression mental health migraines Patients Rare

3 Ways I’ve Eliminated Migraine Trigger Foods  |  JENNIFER  | WORDPRESS blog:   Weekly digest for The Migraine Mantras  |  9 July 2018, Published 6 July 2018

#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 […]

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Awareness campaigns chronic illness Info site invisible illness Medical Conditions / Disorders Newsletters/Papers/Magazines/Blogs Rare Youth matters

The RARE Revolution – Youth Takeover is here!!!! –  #RareYouthProject

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 […]