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EURORDIS: Black Pearl Awards 2021

We are proud to have been nominated for the #EURORDISAwards2021 (EURORDIS Black Pearl Awards) this year, in the category of Visual and Audio Media Award - please vote for us at, before the Rare Disease Day event on 24th February 2021

Digital Annual Family Conference & Interactive Workshop

Our Digital Annual Family Conference & Interactive Workshop can now be accessed "on-demand" on the WorkCast platform for those wishing to watch and/or re-watch our milestone event online! If you have any issues with accessing the site please do get in touch with us by email at: or phone on: 0191 415 06 93

Rare Disease Day: 2021

This year’s #RareDiseaseDay will be more international than ever, something which echos the spirit of global collaboration we have always championed as a founding member of the INPDA International Niemann-Pick Disease Alliance. Find out how you can get involved and support this special awareness event at the official EURORDIS website

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