Registration for EB2020 now open!

Registration for EB2020 now open!

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Registration for EB2020 – the first global congress on epidermolysis bullosa (EB) – is now open! The event will take place at the Park Plaza London Riverbank in London, 19th-23rd January 2020. Epidermolysis bullosa is a group of rare genetic conditions...
M4RD launches ‘red flags’ survey for patient groups

M4RD launches ‘red flags’ survey for patient groups

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Medics4RareDiseases are excited to announce the launch of their new research project: The M4RD Red Flags Survey. The purpose of the survey is to find out what different rare diseases have in common during the time before diagnosis, a period often called ‘the...
1 in 17 photography project

1 in 17 photography project

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1 in 17 is an exciting new project, launched by Findacure’s go-to photographer Barbara Asboth, which focuses on the individuals behind rare disease statistics. The goal is to raise awareness of the paradox of how common rare diseases actually are, by creating a...