Newborn screening across EU needs to become more equitable

https://www.healthawareness.co.uk/rare-diseases/newborn-screening-across-eu-needs-to-become-more-equitable/ Our Research and Policy Senior Manager, Gulcin Gumus, has written for Mediaplanet about inequalities in newborn screening across the EU. She explains how access to early diagnosis and care can depend on where a child is born, and calls for stronger EU-level collaboration to ensure more equitable access to newborn screening across Member States.

ERNs on Air

https://open.spotify.com/episode/2VihltLPdeb7EHViyEANf4 ERNs on Air The latest episode of European Reference Networks (ERNs) on Air, released on 5 October, is hosted by Nora Lázaro, Patient Engagement Manager for ERNs and Healthcare at EURORDIS. In this episode, Nora discusses the patient-led initiative of the Sudden Cardiac Death Letter for Families with Ruth Biller, ePAG Lead in ERN GUARD-Heart, and Lia Crotti, a cardiologist in the network. Together, they discuss how the lived experiences of people affected by rare diseases helped identify an unmet need and highlight the importance of putting patient partnership into practice across ERNs

10 Minutes With Rhiannon Walls: Youth Leadership

https://rememberthegirls.org/ 10 Minutes With... Catch up on our latest episode of 10 Minutes With..., in which our colleague Rhiannon Walls speaks with Taylor Kane, founder and Executive Director of Remember The Girls. Taylor Kane's advocacy journey began in childhood, shaped by her own and her family's experience of adrenoleukodystrophy (ALD). Their conversation highlights the importance of taking young advocates seriously, listening to their lived experiences and empowering them to turn those experiences into meaningful action. https://www.eurordis.org/10-minutes-with-rhiannon-walls/

13th European Conference on Rare Diseases and Orphan Products (ECRD 2026). ECRD 2026,

https://www.rare-diseases.eu/previous-ecrds/ 'Rare Diseases in a Changing and Competitive Europe, shaping policies to address the unmet needs of people living with rare diseases, hybrid ECRD'' ECRD 2026 EURORDIS recently published the Executive Summary of the 13th European Conference on Rare Diseases and Orphan Products (ECRD 2026). ECRD 2026, which took place in June, marked a key milestone in the inclusive, multi-stakeholder process contributing to the development of the now-launched European Blueprint for Rare Diseases. https://www.rare-diseases.eu/

EHFG 2026: Health for a stronger European Union

Health for a stronger European Union High time for action! (28 videos)

https://www.ehfg.org/ EHFG 2026 Our CEO Jean Saslawsky and our Public Affairs Director Rosa Castro recently attended the European Health Forum Gastein 2026. The conference focused on strengthening European health systems and cross-border collaboration amid growing political uncertainty. Jean and Rosa highlighted the importance of advancing a European Action Plan for Rare Diseases and ensuring patient involvement in the development of regulatory sandboxes https://www.youtube.com/playlist?list=PLYwFW4aHI1vA

Webinar Series: Kickstart your advocacy: Practical Advocacy: demystifying European institutions Fecha y hora 26 nov 2026 12:00

https://www.eurordis.org/webinar-series-kickstart-your-advocacy/ Kickstart Your Advocacy This autumn, we are running a series of webinars that recognise the importance of young people in shaping the future of the rare disease community. The third webinar takes place online on 26 November and explores how EU institutions and legislative processes work, helping young people understand how and where they can engage in European advocacy. Register now! This webinar series has been exclusively supported by the Stavros Niarchos Foundation (SNF) through its 30 for 30: Next-Gen Grants Initiative. This series of four free webinars for young people under 30 years old in the rare disease community is designed to provide practical tools, knowledge and skills to help young people strengthen their advocacy and create meaningful change. Whether you are living with a rare disease, supporting someone who is, or already established in rare disease advocacy, the series will explore four key areas: communication and storytelling, leadership, European advocacy, and mental wellbeing and resilience. https://www.snf.org/ Practical Advocacy: demystifying European institutions Fecha y hora 26 nov 2026 12:00 https://us02web.zoom.us/webinar/register/WN_1IAwrEy7Tgm4Vm9NjfmtTw#/registration