Ehlers Danlos Syndrome resources. Where to find information and support.
Raising awareness of Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders… Read More Ehlers Danlos Syndrome resources. Where to find information and support.
Category: Charities
International Dance Celebration Join us and ‘Shake It So’
Some of you may be thinking ‘dance, I can’t do that because of my disabilities’. Well, I’ll be dancing from my sofa! For example, chair dancing, wheelchair dancing and any kind of dancing you can manage is fine.… Read More International Dance Celebration Join us and ‘Shake It So’
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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.
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Are you aware of this #Rare? | Wolfram Syndrome UK Virtual Conference 2020 | 19th and 26th September
Wolfram Syndrome is a rare genetic disorder which is also known as DIDMOAD syndrome after its four most common features: Diabetes Insipidus, Diabetes Mellitus, Optic Atrophy and Deafness… Read More Are you aware of this #Rare? | Wolfram Syndrome UK Virtual Conference 2020 | 19th and 26th September
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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
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Where can you find Fibromyalgia and Chronic Pain resources across the Globe? Find out here!
Chronic Pain management can be a really difficult thing to master, please don’t give up as it can take time, perseverance and a lot of positive attitude until you find your balance with it.… Read More Where can you find Fibromyalgia and Chronic Pain resources across the Globe? Find out here!
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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
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Ehlers-Danlos Syndrome Awareness in the Month of May
Looking for a local support group then please sign up for a basic membership to become a member, it’s free and you get access to their magazine ‘Fragile Links’.… Read More Ehlers-Danlos Syndrome Awareness in the Month of May
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About Us
Contents About Us – our aims and desires, missions and wants as a patient led group. Advocacy & raising awareness Advocacy & raising awareness (Continued from Page 2) – Including: Updated Version! New Look! | #chronicillnessVOICE | SPECIAL EDITION | eyeforpharma Patient Summit Europe ~ My experiences, incl. Im-patient | Carole Scrafton Is pharma being… Read More About Us
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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… Read More Reflecting back! My year of patient, health, research and pharma advocacy 2019 | Carole Scrafton
