Category: Join the Community

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Care givers Child health chronic illness Drug development FibroFlutters Health and medical Healthcare Join the Community medical Medical Conditions / Disorders Medical news stories, blogs and research Partnerships Patient Advocacy Patient Engagement Patients Product Reviews Rare Rare Disease Advocacy Research Survey Therapies and Treatments Twitter Feed

Voice your opinions to improve medical products and services

Rare Patient Voice connects patients and family caregivers with confidential research studies and surveys. Their studies and surveys are opinion based and are all about the patients and caregivers experience to help improve treatments, products, and services.

Get paid to Voice your opinions. Help companies develop better products and services to help provide better healthcare for patients. Create better patient outcomes!

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Awareness campaigns Awareness campaigns, events, blogs, petitions & posters chronic illness chronic pain FibroFlutters Fibromyalgia FMAUK Info site Join the Community Medical Conditions / Disorders Medical news stories, blogs and research Twitter Feed

Fibromyalgia Awareness Week 2021 – #BecomeFibroAware

Unfortunately, there is no one-size fits all solution to the management of fibromyalgia.

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Awareness campaigns, events, blogs, petitions & posters Care givers chronic illness Join the Community Medical Conditions / Disorders Medical news stories, blogs and research Mens health mental health Patient Advocacy Patients Rare Rare Disease Advocacy

Rare Disease Male Support Group – mental health community support.

Great opportunity to get together with other guys that have rare diseases and mental health issues.
Meet in a safe space, talk about what you are going through and offer support to each other if and where needed.

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Awareness campaigns Awareness campaigns, events, blogs, petitions & posters Charities EDS EVENTS HYPERMOBILITY Hypermobility Spectrum Disorders Join the Community Medical Conditions / Disorders Medical news stories, blogs and research Musculoskeletal Patient Advocacy Rare Rare Disease Advocacy rare genetic disorder Supporters / Ambassadors Zebra Strutters

Dazzle4Rare 2021 – #StrutYourStripes with us at ZebraStrutters to raise awareness!

A simple goal of signal boosting rare and undiagnosed patient and community messages. August week long event, joining allies, advocates, small and large non-profit organisations, and others who wish to elevate rare and undiagnosed voices.

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Awareness campaigns, events, blogs, petitions & posters Charities chronic illness chronic pain Fibromyalgia FMAUK Info site invisible illness Join the Community MAY 12TH ME CFS Medical news stories, blogs and research

International Awareness Day May 12th

International Awareness Day – May 12th International Awareness Day – May 12th is held every year to raise awareness of Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS), Fibromyalgia, Multiple Chemical Sensitivity, Gulf War Syndrome and other Chronic Immunological and Neurological Diseases It is important to continue to help people understand what these conditions are, how they affect patients… and […]

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Charities chronic illness Collagen disorder EDS FibroFlutters Global resources HYPERMOBILITY Hypermobility Spectrum Disorders JHS Join the Community Musculoskeletal Patient Advocacy Rare Rare Disease Advocacy rare genetic disorder Support Group Zebra Strutters

Ehlers Danlos Syndrome resources. Where to find information and support.

Raising awareness of Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders

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Articles Ataxia Awareness campaigns Awareness campaigns, events, blogs, petitions & posters Charities chronic illness Educational Info site Join the Community Medical Conditions / Disorders Patient Advocacy Patients Rare

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

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Awareness campaigns, events, blogs, petitions & posters Care givers Charities Child health chronic illness EVENTS Join the Community Medical Conditions / Disorders Medical news stories, blogs and research Patient Advocacy Patients Rare rare genetic disorder Sites to visit Support Group Webinar Youth matters

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

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Awareness campaigns, events, blogs, petitions & posters Care givers Charities chronic illness Chronic SoMe platforms clinical trials Drug development EDS FibroFlutters HOME Join the Community Medical Conditions / Disorders Patient Advocacy patient centricity Patient Engagement Patients pharma Pharma / Science / Tech / Digital / AI Professionals Rare Research Support Group Youth matters

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.

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Arthritis Charities chronic illness chronic pain Chronic Widespread Pain Definitions Of Fibromyalgia Diagnosis Dilemmas Educational Fibro - What's that? Find out here! Fibro MeCFS online NEWS & INFO sources Fibromyalgia Global resources Health Care Providers Healthcare Info site invisible illness Join the Community Medical Conditions / Disorders Musculoskeletal NHS Patients Professionals Simply Symptoms Sites to visit The hints and tips station

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.