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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Learn: Open Academy: EURORDIS’ training programme, Raquel Castro, Open Academy Director, EURORDIS & Ilaria Galetti, FESCA, Italy
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Represent: European Patient Advocacy Groups (ePAGs), Ines Hernando, ERN and Healthcare Director, EURORDIS & Anne-Laure Aslanian, Arian Weinman and Lenja Wiehe, ePAG Engagement Managers, EURORDIS
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Therapeutic Action Group (TAG), Virginie Hivert, Therapeutic Development Director, EURORDIS & TAG members
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Participate: Rare Disease Day: Simona Bellagambi, UNIAMO and EURORDIS, Italy
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Workshop 2: Working in a virtual world: Online Conferences and Fundraisers
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How to organise engaging meetings and conferences online: practical tips, platforms, and budgets, Sharon Ashton, Events Director, EURORDIS
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Holding a successful fundraising sports event online, Elvira Martinez, FEDER, Spain
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Creating an online auction, Saskia de Vries, ACHSE, Germany
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Organising an online conference for cystinosis, Claudia Sproedt, Cystinosis Network Europe
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Introduction to the Digital School, Marta Campabadal, RareConnect Manager, EURORDIS
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Engaging with the media and celebrities, Catherine Fowler, Aortic Dissection Charitable Trust, UK
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Launching projects in a virtual world, Dorica Dan, RONARD and EURORDIS, Romania
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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?
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The young patient’s perspective: Challenges for the familial hypercholesterolemia community (Global Call for Action), Athanasios Pallidis, FH Europe, Greece
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Rare 2030 Recommendations: The roadmap for the next decade, Anna Kole, Public Health Policy Director, EURORDIS
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State of the art of rare diseases across Europe: National plans, Vicki Hedley, Newcastle University, UK
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Advocating for change at national level: Considering Rare 2030 in the Italian national plan, Annalisa Scopinaro, UNIAMO, Italy & Stefano Benvenuti, Fondazione Telethon, Italy
Advocating for change at European:
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Workshop 3: Moving forward: The Rare 2030 Campaign
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Rare 2030 Campaign for a new policy framework: Why we need your support and how this will help you! Anna Kole, Public Health Policy Director & Jenny Steele, Campaign Manager EURORDIS
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How to advocate with your MP/MEPs – Tell a story, Kostas Aligiannis, Public Affairs Manager, EURORDIS, & Dominique Sturz, Pro Rare Austria
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International policies for rare diseases: UN Resolution on addressing the challenges of persons living with Rare Diseases, Clara Hervas, Public Affairs Manager, EURORDIS
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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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Rare 2030 Recommendation 2: Earlier, Faster, more accurate diagnosis, Antoni Montserrat, ALAN, Luxembourg
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NBS in Healthcare (Next Generation Sequencing for NBS), Nick Meade, Genetic Alliance UK
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Presentation of Key Principles for Newborn Screening and roadmap to implementation, Gulcin Gumus, Research & Policy Project Manager, EURORDIS
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Case study: Newborn Screening for SMA, Marie Christine Ouillade, European Alliance of NBS for SMA
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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