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November 2021

Online workshop | Getting involved in research and trial design

30th November at 11:00 am - 2nd December at 1:00 pm

Join us from the 30th of November to the 2nd of December for our next workshop | Getting involved with clinical research and trial design!

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December 2021

Webinar | Maximising engagement with healthcare professionals

14th December at 11:00 am - 12:30 pm

Join this webinar to explore the practical things patient groups can do to make sure they are engaging with HCP's in the most beneficial way. Most rare diseases are not concentrated in one area or country and do not affect one singular body system, which makes finding healthcare professionals (HCPs) or specialists who understand them a real challenge for patients and patient organisations. Yet, it is often a top strategic priority for patient organisations to find and engage with these…

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February 2022

The International Rare Disease Showcase

1st February, 2022 - 3rd February, 2022

While COVID-19 brought social isolation to many, it also opened up the world through digital meetings and connections – in this year’s showcase we want to highlight those international collaborations that are aiming to drive the field of rare diseases forward, as well as studying the differing impact and challenges of working in rare disease in different territories around the world.

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