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FibroFlutters Patient Advocacy Organisation | Chronic Illness & Rare Disease Network

Patient, Health, Research, Medical, Clinical, Digital Health and Pharma news, information, communications, advice, reviews and resources

MY FIRST HAND ACCOUNT OF HOW THE NHS IS STRUGGLING…

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July 26, 2018 fibrofly73chronic illness

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Previous Post Are you interested in #research? Would like to get more involved, or know what research is going on around you?

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Ataxia is raredisease affecting Balance Speech and Coordination. Ataxia and Me are “Patients Helping Patients”

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

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EDS, JHS, Hypermobility & HSD’s News and info

Home Page: Pain News Network non-profit online news service
8 Tips for Patients Newly Diagnosed with Ehlers-Danlos Article By Ellen Lenox Smith, Columnist – PainNewsNetwork 2015
How to Explain Your Pain to a Doctor by Dr. Michael J. Cooney, D.C. How to Explain Your Pain to a Doctor by Dr. Michael J. Cooney, D.C.
EDS and Chronic Pain News & info Blog about EDS and Chronic Pain sharing appropriate news and info
Ehler's Danlos Support Uk EDS UK was set up in 1987 to support, advise & inform those living with the Ehlers-Danlos syndromes. 25+ years later, they remain the only UK based charity that exclusively represents & supports EDS.

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Don’t ever let anyone dull your sparkle

$The Liebster Award: The Official Rules + My First Blog Award and a Few Personal Secrets Revealed - May 2, 2013 \ Lorraine > Last Updated on: December 7th, 2017$

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Don’t be afraid to reach out!

Fight or Flight?

Calendar of posts

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Hello and thank you for visiting our website, FibroFlutters is a 'Patient-Led' Non-profit Community based Patient organisation that is ran by 'unpaid' Patient Volunteers. * We raise awareness, share health communications to educate people about varying chronic illnesses. * Provide resources for patients & professionals alike. * We strive to be patient / health /research /pharma advocates to help create better outcomes for patients whilst promoting patient/person centred multi-disciplinary approaches to medical healthcare. * If you like the work that we do? Please help to support us. * All donations will be graciously received. Carole ~ CEO / Co-Founder on behalf of all patient volunteers at FibroFlutters

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Happy St Patrick's Day

Homemade chicken n veg soup, yes, made in the crockpot. Served with wholemeal and rye sourdough bread

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Bakery Style Pistachio Pudding Muffins March 22, 2023
These pistachio pudding muffins have a secret ingredient to make them extra fluffy and moist: instant pistachio pudding mix! When fresh the muffins have a large crispy top that make them look like they come from a professional bakery. Grab the recipe in the p..
hummingbird high
Vanilla, Pistachio and Strawberry Mini Loaf Cakes March 22, 2023
These Vanilla Pistachio and Strawberry Mini Loaf Cakes are a great choice for entertaining. The easy to make cakes have a buttermilk and vanilla base, and they are studded with chopped pistachios and strawberries. I used freeze dried strawberries in these cak..
Baking Bites by Nicole Weston
Do you have what it takes to be a great Director of Strategic Partnerships? March 22, 2023
Becoming a great director of strategic partnerships is no easy feat. Becoming a director of any kind is a challenge in itself but directing strategic partnerships is a unique role that requires a particular combination of skills, experience, and personality t..
HYPE
Roasted Chickpea & Veggie Bowls with Green Tahini Sauce March 22, 2023
A nourishing, flavorful bowl that comes together fast with minimal cleanup? That’s our kind of meal! These Mediterranean-inspired veggie bowls combine spicy roasted chickpeas, vibrant roasted veggies, and optional grains with an herby green tahini sauce. Prep..
Minimalist Baker
Red Velvet Chocolate Chip Cheesecake Bars March 22, 2023
My red velvet obsession has extended once again; this time, I can’t stop thinking about these red velvet cheesecake bars! With a thick, cakey crust and rich creamy topping, these easy treats will fulfill your red velvet craving without costing you the time an..
Crazy for Crust
CRYSTALS FOR ENERGY AND NOT JUST TO LOOK PRETTY… March 22, 2023
Crystals are decorative, fascinating gemstones and come in all shapes and sizes. They have magical powers and properties. They generate, store, regulate, transmit and transform energy. It is a holistic therapy that has been used throughout ancient times for p..
Backpainbloguk.com
Creamy Sun-Dried Tomato Pasta with Melted Burrata. March 22, 2023
Creamy Sun-Dried Tomato Pasta with Melted Burrata. Hot creamy pasta tossed with burrata cheese...an all-in-one dinner that everyone loves! READ: Creamy Sun-Dried Tomato Pasta with Melted Burrata. ..
Half Baked Harvest by Tieghan.
Wearable microscopes advance spinal cord imaging in mice March 22, 2023
Scientists have created wearable microscopes to enable unprecedented insight into the signaling patterns that occur within the spinal cords of mice. This technological advancement will help researchers better understand the neural basis of sensations and movem..
ScienceDaily » Chronic Illness News
Obesity risk may pass from mothers to daughters March 22, 2023
Women with obesity may share risk for the disease with their daughters, but not their sons, according to a new study.
ScienceDaily » Chronic Illness News
T Cells Remember SARS-CoV-2 in Rituximab-Treated Pemphigus Vulgaris March 22, 2023
Pemphigus vulgaris affects approximately 0.1 and 0.5 per 100,000 people per year (Langan et al., 2008); it has a striking morbidity and mortality reported as high as 5% in recent cohort studies (Uzun et al., 2006). There is no sex predominance, and the mean ag..
Journal of Investigative Dermatology

NIHR – Clinical research is everyone’s future

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Happy St Patrick's Day

Homemade chicken n veg soup, yes, made in the crockpot. Served with wholemeal and rye sourdough bread

Picture Gallery

Listen to the sounds of the water rushing and feel its energy as is flows and you breathe

aving a tough time, can’t figure things out? Here’s a pretty place for self reflection

Fantasy land

An eye into the unknown

StillnessSpeaks.com

A place of serenity by the pool

Guide yourself down the path to the…?

A picture for using your imagination to take you on a peaceful journey

A thoughtful walk or a fantastical adventure with fairies and pixies, or knights on white horses!? wherever your mind takes you.

What will you find if you wander through the gate

A scented garden to take your mind on a soothing aromatic journey.

Who would you like to sit and chat with?

Great place for sound imagery, hear the watery echoes

Go on take a seat, sit back let yourself relax and close your eyes, and absorb the nature around you What can you hear? What can you smell?

Feel the stillness and breathe long and deep

… forget about the world and spend some time on yourself

An image to guide your mind to anywhere whilst laying on the beach

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PLEASE NOTE: That here at fibroflutters.com we are not medical professionals just fellow chronic illness warriors sharing information.

Any information read or shared on, to or from this blog site should not override any advice given to you by your own Doctors.

PLEASE NOTE THAT THIS SITE USES GOOGLE ANALYTICS TO COLLECT DEMOGRAPHIC INFORMATION FOR INFORMATION AND CONTENT DECISION MAKING PURPOSES ONLY AND NOT TO SELL TO 3RD PARTIES. PLEASE:

Do not take any work, articles or pages to be your own, including those from third partie, or any external partie links, and always accredit the appropriate authors accordingly.

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Remember that buying products such as 'cure-claiming' remedies on-line can be a risky business and again FibroFlutters will not claim responsibility for any loss or damage from third parties/third partie links or any external parties.

MANY THANKS in advance for your understanding - from the administrator - fibrofly73

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