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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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  • 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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  • emotive supports Rare Disease Day 2019

    With a series of events and activities over the week leading up to Rare Disease Day on February 28th, we showed our support for stimulating greater awareness of Rare Diseases along ... In line with the Rare Disease Day theme, we took photos of our team

  • Origins Insights nominated for two EVCOM Clarion Awards Origins Insights nominated for two EVCOM Clarion Awards

    Origins Insights are excited that our ‘What One Thing…?’ short film for Rare Disease Day 2021, made in collaboration with Inspired Films, shortlisted for the 2021 EVCOM Clarion Awards.

  • Rare Disease Day in a COVID-19 environment

    For many people and families living with a rare disease, their journey can be very complex. ... Another vital stakeholder in the rare disease community are the specialist charities providing tailored disease-specific guidance and support, for children

  • Why we need to look at rare diseases in a different way Why we need to look at rare diseases in a different way

    28 February 2021, Rare Disease Day aims to raise awareness of rare diseases and the impact they have on patients’ lives. ... Critically, although we define individual rare diseases as rare, collectively there are around 7, 000 which means that 1 in 17

  • Why we need to look at rare diseases in a different way

    28 February 2021, Rare Disease Day aims to raise awareness of rare diseases and the impact they have on patients’ lives. ... Critically, although we define individual rare diseases as rare, collectively there are around 7, 000 which means that 1 in 17

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Approximately 6 fully matching, plus 16 partially matching documents found.

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