John Walton MD Research Centre

Share4Rare Webinar VIII: ‘State of the Art of Rare Disease Activities in Europe’

Banner webinar April 27th
John Walton Muscular Dystrophy Research Centre organises this Share4Rare webinar in which two experts will introduce a useful resource compiling all the rare disease activities that are conducted in the European territory

The Resource on the ‘State of the Art of Rare Disease activities in Europe’ is a well-established resource providing valuable, detailed information for all stakeholders in the field of rare diseases. It highlights activities and progress at both the European Union (EU) and Member State (MS) levels. It is composed of two ‘halves’: a comprehensive ‘Overview’ report which highlights past, current and future rare disease activities in Europe (as well as the political frameworks in the field of rare diseases around the world); and the country-specific reports, outlining how each MS is tackling the challenges of rare diseases. The ‘State of the Art’ Resource was initiated by the Orphanet team in Paris and since 2015 has been led from Newcastle University, funded via a series of European projects. 

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In this webinar, Victoria Hedley and Hannah Murray from the John Walton Muscular Dystrophy Research Centre at Newcastle University will introduce the audience to the ‘State of the Art’ resource, helping participants to identify how they might use it in their own personal or professional activities.

The presenters will provide information on the history of the resource, how it has evolved, the data collection process, and how that information is currently being used to enrich the Rare 2030 project. 

This webinar will be of interest to anyone who would like a better understanding of rare disease activities within the European Union and across individual Member States.   


The webinar will take place on Wednesday April 29th, 19:30 CET. Do you want to learn more about rare disease activities taking place in Europe? Register here!


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