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.

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

May is Ehlers-Danlos Syndrome Awareness Month

May 12th International Fibromyalgia Awareness Day

Many thanks for supporting the work that the charity Fibromyalgia Action UK does towards raising awareness through educating people about what fibromyalgia is. Also, through the many support groups that the charity has throughout the UK that all support patients with fibromyalgia.… Read More May 12th International Fibromyalgia Awareness Day

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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!… 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

Fibromyalgia? What’s that?Pronounced:- Fi – bro – my – al – jia – UPDATED POST

Read this post to find resources for fibromyalgia and to learn the different definitions from around the medical websites and dictionaries.… Read More Fibromyalgia? What’s that?Pronounced:- Fi – bro – my – al – jia – UPDATED POST

#RAREsummit19 | 23 September in Cambridge | I’m going, will you join us?!

Patients & Caregivers | American College of Rheumatology | Find information you need about rheumatic diseases & conditions.

Working in tandem with the Health Care Professionals is not easy for many patients, so it is important for the person that you care for to make their healthcare team aware that ‘you’ are their personal care-provider and support system.… Read More Patients & Caregivers | American College of Rheumatology | Find information you need about rheumatic diseases & conditions.