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Rare Disease Day

This page shows the latest Rare Disease Day news and features for those working in and with pharma, biotech and healthcare.

bluebird bio marks Rare Disease Day 2021 with launch of patient testimonial video

bluebird bio marks Rare Disease Day 2021 with launch of patient testimonial video

Panos Englezos, President of the Thalassaemia International Federation, Cyprus. To mark Rare Disease Day 2021, gene therapy company bluebird bio has joined forces with a number of leading patient organisations and ... I hope with all my heart that one

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  • How understanding the rare disease patient’s lived experience creates better health communications How understanding the rare disease patient’s lived experience creates better health communications

    This journey formed the basis of a film, ‘Noah’s Story’, made by Bedrock Healthcare Communications to mark Rare Disease Day 2022. ... Principles of rare disease healthcare comms. Whatever the form rare disease healthcare communication takes, we

  • EU cross-border healthcare EU cross-border healthcare

    Rare Disease Day, an annual event that is marked each year on the last day in February, is a unique occasion to increase awareness of rare diseases that affect an estimated ... It’s time for action. Rare Disease Day gives us the opportunity to look at

  • Case-study for thalassaemia: Dimitri Azzopardi Case-study for thalassaemia: Dimitri Azzopardi

    An in-depth look at beta thalassaemia for Rare Disease Day. Beta thalassaemia major is a serious, lifelong genetic blood disorder. ... You can find information about Rare Disease Day here and here, or via the Twitter activity.

  • Rare Diseases Day Rare Diseases Day

    On Rare Disease Day in 2019 it is surprising to note that few rare diseases have benefited from the digitisation of condition management and disease information in the same way as ... Yet, there is no cure for the majority of rare diseases and many go

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We are the Havas Lynx Group. Devoted to fresh thinking. Changing the way the world does healthcare communications for the...

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Box 1
Strategic commitment
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KOL Ambassador Program & Podcast Creation: A Customer Story
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Animation: Living With
The journey from the patient's perspective...