There’s still time to REGISTER for this conference on RARE DISEASE AND ORPHAN DRUGS 1 – 2 October

The goal of this Conference is uniting all well-known clinical researchers, biotech professionals, Medical Advisories, Academicians and decision makers to discuss possible ways to accelerate orphan drug development and access to rare disease patients, including the introduction of recent technologies and products to help aid the access of orphan drugs… Read More There’s still time to REGISTER for this conference on RARE DISEASE AND ORPHAN DRUGS 1 – 2 October

Are you aware of this #Rare? Today is International Ataxia Awareness Day.

International Ataxia Awareness Day (IAAD) is on September 25 of each year. It is a coordinated effort from individuals and Ataxia organisations around the world to help shed light on this rare disease. #IAAD… Read More Are you aware of this #Rare? Today is International Ataxia Awareness Day.

Pigmented Villonodular Synovitis (PVNS) our Co-Founder’s patient experience with ultra rare disease. #dazzle4rare2020

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

Reflecting back on 2020, come look at my advocacy! Then will you please, please, endorse me. #WEGOHealthAwards

Okay, let’s get on with it! The following information is to help give you reasons for why you should endorse Carole for #WEGOHealthAwards… Read More Reflecting back on 2020, come look at my advocacy! Then will you please, please, endorse me. #WEGOHealthAwards

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

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

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.… Read More Rare Revolution Magazine |  RARE Round-up 🌍 |  11 October 2018

A selection of posts by chronic bloggers via The Mighty 

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 

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… 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