Raising awareness of Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders
Category: JHS
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Awareness campaigns Awareness campaigns, events, blogs, petitions & posters Charities chronic illness chronic pain Chronic Widespread Pain Collagen disorder EDS EDS news and info FibroFlutters Global resources HYPERMOBILITY Hypermobility Spectrum Disorders Info site invisible illness JHS Join the Community Medical Conditions / Disorders Musculoskeletal Patient Advocacy Rare rare genetic disorder Sites to visit
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’.
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About Us - FibroFlutters Awareness campaigns Charities Child health chronic illness chronic pain Chronic SoMe platforms Disability Drug development EDS news and info Educational EVENTS eyeforpharma Fibro MeCFS online NEWS & INFO sources FibroFlutters Home News Fibromyalgia FMAUK Healthcare HOME HYPERMOBILITY im-patient invisible illness JHS Join the Community MAY 12TH ME CFS Medical Conditions / Disorders mental health Miscellaneous & Other Neurology Newsletters Newsletters/Papers/Magazines/Blogs NIHR NIHR Clinical Research Network Patient & Public Involvement & Engagement Patient Research Ambassador Initiative Patient Advocacy Patients Patients included pharma Pharma / Science / Tech / Digital / AI Professionals Rare Research Skin conditions SoMe Platforms Support Group Twitter Twitter Feed WEGO HEALTH
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 […]
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Articles Awareness campaigns Awareness campaigns, events, blogs, petitions & posters Child health chronic illness Collagen disorder EDS events FibroFlutters genetics HYPERMOBILITY Hypermobility Spectrum Disorders JHS Media Medical Conditions / Disorders Medical news stories Newsletters/Papers/Magazines/Blogs Patient Advocacy pharma Pharma / Science / Tech / Digital / AI Professionals Rare
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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Academics AI in medicine Articles Autoimmune Awareness campaigns Awareness campaigns, events, blogs, petitions & posters Biomedical scientists Bursitis Care givers Charities Child health chronic illness chronic pain clinical trials Collagen disorder conference Deep learning Diagnosticians Digital Health Disability Drug development EDS EVENTS eyeforpharma FibroFlutters Fibromyalgia FMAUK Gastro / Gut / Bowel genetics genomics Health Care Providers Healthcare HOME HSDs HYPERMOBILITY Hypermobility Spectrum Disorders im-patient inflammatory Info site invisible illness Irritable Bowel Syndrome (IBS) JHS Machine learning MAY 12TH ME CFS Medical Conditions / Disorders Medical technologists mental health Musculoskeletal Neuroscience NHS NIHR NIHR Clinical Research Network Patient & Public Involvement & Engagement Patient Research Ambassador Initiative Patient Advocacy patient centricity Patient Engagement Patients Patients included pharma Pharma / Science / Tech / Digital / AI Product Reviews Professionals public health Rare Research Researchers Support Group WEGO HEALTH Youth matters
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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#Innovation Alternative / Complementary Therapies & Treatments Arthritis Blogs / Bloggers chronic illness chronic pain Collagen disorder Disability EDS Fibromyalgia HYPERMOBILITY invisible illness JHS Medical Conditions / Disorders Medical Device Medical news stories, blogs and research Multiple Sclerosis (MS) Musculoskeletal Patients Pharma / Science / Tech / Digital / AI Product Reviews Rheumatoid arthritis Skin conditions Therapies and Treatments Video
Stretch, 1, 2, 3, 4… Bend 1, 2, 3, 4 … | ActivePosture shirt – Product review | Carole Scrafton (sponsored post)
I decided to test how long it would be before my back began to ache when sat in a regular dining chair, one with no arms and a straight back. It wasn’t long before I began to notice little things….
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Arthritis Articles Awareness campaigns Awareness campaigns, events, blogs, petitions & posters big data Blogs / Bloggers cancer celiac Charities Child health chronic illness chronic pain Chronic SoMe platforms clinical trials Collagen disorder conference Dementia / Alzheimers Digital Health Disability Drug development EDS news and info Educational EVENTS eyeforpharma FibroFlutters Home News Fibromyalgia Healthcare Heart Health HYPERMOBILITY Hypermobility Spectrum Disorders im-patient Info site invisible illness JHS Join the Community Juvenile arthritis ME CFS Medical Device Medical news stories Musculoskeletal Neuroendocrine Neurology Neuroscience Newsletters/Papers/Magazines/Blogs NIH ( The National Institutes of Health ) US NIHR Patient Advocacy Patients Patients included pharma Pharma Pharma / Science / Tech / Digital / AI Professionals Rare Research Rheumatology SoMe Platforms Support Group The CHILLOUT LOUNGE Twitter Feed WEGO HEALTH
#chronicillnessVOICE | Health & medical related mini-mag for everyone| February 2019 | #notjustpatients
Feature: ‘Find Me A Cure’
Very soon FibroFlutters website will have it’s own very unique widget for readers to search for appriate clinical trials for any illness anywhere in the World and Find Me A cure have already sent me some designs to choose from.
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About Us - FibroFlutters Alternative / Complementary Therapies & Treatments Arthritis Articles Awareness campaigns Awareness campaigns, events, blogs, petitions & posters Blogs / Bloggers cancer Charities Child health chronic illness chronic pain Chronic SoMe platforms clinical trials Dementia / Alzheimers Diabetes Digital Health Disability Educational EVENTS eyeforpharma FibroFlutters Home News FibroFlutters Milestone Fibromyalgia FMAUK Food, drink and recipes Healthcare Heart Health HYPERMOBILITY im-patient Info site invisible illness JHS Join the Community Juvenile arthritis Medical Conditions / Disorders Medical Device Medical news stories Medical news stories, blogs and research mental health Musculoskeletal Neurology Neuroscience Newsletters/Papers/Magazines/Blogs Pain management Patient Advocacy Patients pharma Pharma Pharma / Science / Tech / Digital / AI Podcast Professionals Rare Research Rheumatoid arthritis Rheumatology SoMe Platforms Twitter Feed Webinar
Special edition Happy new year & ‘Happy birthday’ #chronicillnessVOICE 1yrs young| January 2019 ~ a health newsletter for everyone! #chronicillness #notjustpatients
‘Attending an event during the middle of hibernation was a little daunting but I wasn’t going to let that stop me from going. ‘
What a way to celebrate our newsletters 1st birthday
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Autoimmune chronic illness chronic pain Chronic/Invisile illness NEXT MEET UP Disability eyeforpharma FibroFlutters Home News Fibromyalgia FMAUK Healthcare HOME HYPERMOBILITY Info site invisible illness JHS Join the Community LUPUS ME CFS Medical Conditions / Disorders mental health Patient Advocacy Patients pharma Professionals Support Group The hints and tips station
Home news | Next meet up is on 20th November
This meeting is also for our Fibromyalgia members and Fibromyalgia Action UK supporters as an extra meeting on top of our sister FMA UK Fibromyalgia group’s meeting on the FIRST MONDAY OF THE MONTH which our members are welcome to Join.
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Arthritis Articles Autoimmune Biochemistry cancer Central Sensitivity Syndromes chronic illness chronic pain Chronic SoMe platforms Collagen disorder Cystic Fibrosis Disability Drug development EDS Educational Endocrinology Fibromyalgia Gastro / Gut / Bowel Healthcare Heart Health HIV HSDs HYPERMOBILITY Hypermobility Spectrum Disorders Info site invisible illness JHS Join the Community Juvenile arthritis LUPUS Lyme Disease MCAD Medical Conditions / Disorders Medical news stories migraines Multiple Sclerosis (MS) Muscular Symptom Atrophy Musculoskeletal Neuroendocrine Neurology Neuroscience Newsletters/Papers/Magazines/Blogs Patients pharma Professionals Research Respiratory Rheumatoid arthritis Somatic Symptom Disorders
RELIEF: PAIN RESEARCH NEWS, INSIGHTS AND IDEAS |BROUGHT TO YOU BY THE IASP PAIN RESEARCH FORUM
Headliner: Coming Together to Put Patients First in Headache Treatment | By Stephani Sutherland
Coming Together to Put Patients First in Headache Treatment