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RAREfest22 – At the forefront of this event are the patients themselves!

RAREfest22 is the world’s only rare disease-inspired festival attracting an audience of stakeholders alongside the public. Festival-goers listen to expert talks, watch films, interact with around 25 exhibits, hear powerful patient stories and mingle with those taking part and others attending.

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My experience – First face-to-face event in 2 years!

This week I was lucky enough to attend the ‘Patient Centricity and Collaboration Global Congress 2021, Europe, that was held in London on 8-9th November. By Paradigm Global Events, that was held in London on 8-9th November. The last time I attended such an event in person was in October 2019, in London. In this article I discuss it, my experience and share the messages that I took with me.

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Voice your opinions to improve medical 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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#Innovation Awareness campaigns, events, blogs, petitions & posters Care givers Drug development EVENTS Health and medical Healthcare Industry & business matters Media Partners medical Medical Conditions / Disorders Medical news stories, blogs and research Patient Advocacy patient centricity Patient Engagement Patients pharma Professionals Rare Rare Disease Advocacy rare genetic disorder Researchers Scientists Supporters / Ambassadors Twitter Feed

RARE Summit 21 – it’s more than an event – it’s where the magic happens!

RAREsummit is more than an event – it’s where the magic happens.  A powerful movement for change that provides the right ingredients and ecosystem for a better future, where productive collaborations are nurtured and flourish for real patient impact.

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Ataxia Awareness campaigns Awareness campaigns, events, blogs, petitions & posters Charities chronic illness Health and medical Healthcare Medical Conditions / Disorders Medical news stories, blogs and research Neurology Patient Advocacy Patients Rare Rare Disease Advocacy rare genetic disorder Supporters / Ambassadors Twitter Feed

International Ataxia Awareness Day 25th September with ‘Ataxia and Me’

The word ‘ataxia’ comes from the Greek ‘a taxis’, which means ‘without order’.
          Our mission is to bring back some of the order to the lack of order
It is the term used for a group of neurodegenerative diseases that affect balance and coordination.

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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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#chronicillnessVOICE Aug 17 health, medical, pharma and research news

Bringing a varied selection of health news, medical news, pharma news, research news to you in relation to many aspects within the healthcare, medical healthcare & pharmaceutical landscapes.

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Ataxia Awareness campaigns, events, blogs, petitions & posters Charities Collagen disorder Disability EDS EVENTS FibroFlutters Patient Advocacy Patients Rare Rare Disease Advocacy rare genetic disorder Sites to visit Zebra Strutters

We’re off mobilising for charity – 1 month long Superhero Series challenge

Using my rollator with its seat for those appropriately paced stops we hope to get out of the back lane this time. Last year the pandemic put restrictions on how I could complete the challenge.

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About Us - FibroFlutters Articles Ataxia Awareness campaigns, events, blogs, petitions & posters Charities chronic illness chronic pain Disability EDS EVENTS FibroFlutters Fibromyalgia Gastro / Gut / Bowel Health and medical Healthcare Info site invisible illness Medical Conditions / Disorders Medical news stories Medical news stories, blogs and research mental health Multiple Sclerosis (MS) Musculoskeletal Neurology Neuroscience Newsletters/Papers/Magazines/Blogs Patient Advocacy Patients Pharma / Science / Tech / Digital / AI Professionals public health Rare Rare Disease Advocacy Research Sites to visit Therapies and Treatments

#chronicillnessVOICE July 6, health, medical, pharma and research news

Bringing a varied selection of health news, medical news, pharma news, research news to you in relation to many aspects within the healthcare, medical healthcare & pharmaceutical landscapes.

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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.