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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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Academics Ataxia Autoimmune cancer chronic illness chronic pain clinicians conference EDS EVENTS FibroFlutters Gastro / Gut / Bowel Geneticists Health and medical Healthcare invisible illness Media Media Partners medical Medical Conditions / Disorders Medical news stories, blogs and research Medical specialists / consultants Patient Advocacy Patient Engagement Patients Precision Medicine Professionals Rare rare genetic disorder Researchers Respiratory Rheumatology Sites to visit Supporters / Ambassadors Twitter

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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AI in medicine clinicians Deep learning EVENTS Health and medical Machine learning medical Medical Conditions / Disorders Medical news stories, blogs and research Medical specialists / consultants Medical technologists Pharma / Science / Tech / Digital / AI Professionals Radiology Sites to visit Supporters / Ambassadors Webinar

AI in radiology – AI-enabled opportunistic screening in medical imaging

Join this exclusive webinar – Discussing the impact of AI-enabled opportunistic screening in medical imaging and how this can positively impact on population health at scale.

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Awareness campaigns Health and medical Medical news stories, blogs and research Patient Advocacy Patients Rare Rare Disease Advocacy Supporters / Ambassadors Webinar

ARDEnt Report – Rare Disease and the impact of the COVID19 pandemic.

“CRDN collaborated with Medics 4 Rare Diseases and Rare Revolution Magazine to bring together a cross sector group of experts and advocates newly named ARDEnt (Action for Rare Disease Empowerment) to produce a report called “Future Proofing Rare Disease Care, Research, and Treatment.” 

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Clinical 2021 on 7-9 April | Reuters Events Pharma

It is a great pleasure to let you know that I’m going to be co-hosting a roundtable with Dr. Oleksandr Gorbenko at Reuters Events Clinical 2021, 7-9 April. We’re excited to be speaking on the implementation of patient engagement in post-pandemic early phase R&D at Clinical 2021. The premise for this roundtable has come from […]