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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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#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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PROUD PARTNERS – Precision Medicine Forum PATIENT WEEK

Patient Week convenes healthcare professionals, researchers, industry, payers and patients/patient advocates in a unique setting which puts the patient front and centre of the discussions. This time around there will be panels sessions, roundtables, 1-2-1 networking and group networking sessions.

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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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#chronicillnessVOICE May 11 health, medical, pharma and research news

#chronicillnessVOICE May 11 – health, patients, medical, research, pharma related news for everyone #notjustpatients #chronicillnessVOICE May 11: 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. #chronicillnessVOICE #notjustpatients #chronicillness #patients #health #research #pharma #science #AI #digitalhealth […]

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#chronicillnessVOICE April 20 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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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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There’s still time to REGISTER for this conference on RARE DISEASE AND ORPHAN DRUGS 1 – 2 October

The goal of this Conference is uniting all well-known clinical researchers, biotech professionals, Medical Advisories, Academicians and decision makers to discuss possible ways to accelerate orphan drug development and access to rare disease patients, including the introduction of recent technologies and products to help aid the access of orphan drugs