Presentations from the EURORDIS Membership Meeting 2021

 

Workshop 1: EURORDIS 101: What can EURORDIS do for you?

How can you engage with EURORDIS?

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Workshop 2: Working in a virtual world: Online Conferences and Fundraisers

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Networking session/Soap box

Plenary Session: Shaping the next 10 years of rare disease policies: Europe’s Action Plan for Rare Diseases

Why do we need to advocate together for a new policy framework for rare diseases?

Advocating for change at European:

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Workshop 3: Moving forward: The Rare 2030 Campaign

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Workshop 4: Moving forward: Advocating for a specific issue

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Workshop 4 Breakout 1 – Access to potentially curative therapies

Workshop 4 Breakout 2 – Newborn Screening & Innovative diagnosis

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Workshop 4 Breakout 3 – Taking action on ERNs at national and European level

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Page created: 21/05/2021
Page last updated: 22/05/2021
 
 
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases