Registries: how can you work with existing registries or set up a registry?

https://openacademy.eurordis.org/courses/registries-how-can-you-work-with-existing-registries-or-set-up-a-registry/ Developing Registries Eager to learn how to develop a registry? The EURORDIS Open Academy is offering a course exploring how you can work with existing registries or set up a registry. Developed in collaboration with key experts in the field, this course will explore how advances in technology and expertise are improving the registry development process. Enrol now! https://openacademy.eurordis.org/

Rare diseases as a strategic driver of Europe’s biotech leadership ++

https://www.europeanfiles.eu/health/rare-diseases-as-a-strategic-driver-of-europes-biotech-leadership Published in the July issue of the European Files "Revolution: Europe's Quest for Health Sovereignty", an article written by EURORDIS President Avril Daly examines how the proposed European Biotech Act I can help strengthen Europe's global leadership in biotechnology by placing rare diseases at the heart of innovation. Avril argues that rare diseases have long driven breakthroughs in areas such as genomics, advanced therapies and precision medicine, and calls on policymakers to ensure the Biotech Act supports the research, investment and collaboration needed to translate scientific advances into better outcomes for patients. https://www.europeanfiles.eu/magazine/europes-quest-for-health-sovereignty-building-the-next-generation-of-biotechnology

Support Structure for Meaningful Patient Partnership in the European Reference Networks (ERNs): A Guide for ERN Coordinating Teams July 2026

https://www.eurordis.org/publications/support-structures-for-meaningful-patient-partnership-in-the-european-reference-networks/

The Patient Partnership Hub

The Patient Partnership Hub provides resources to support the planning and implementation of patient partnership within healthcare networks. It offers best practices, guides, tools, and materials to enhance your partnership skills. You may search resources by keyword, area of work or type of resource. The Patient Partnership Hub https://www.eurordis.org/patient-partnership-hub/

Patient Partnership Webinar Series: Transition in Healthcare May 2026

https://www.eurordis.org/patient-partnership-webinar-series/ Patient Partnership Webinar Series: Transition in Healthcare May 2026 Targeted at ERN Coordinating teams, ePAG advocates, National Alliances, HCPs and Hospital Managers, the EURORDIS webinar series, “Transition in Healthcare: Turning recommendations into practise” highlighted how ERN recommendations on transition from paediatric to adult healthcare can be translated into wider practise.

Position Statement: An Urgent Call for EU-level Collaboration on Newborn Screening June 2026

https://www.eurordis.org/publications/position-statement-eu-level-collaboration-on-newborn-screening/ EURORDIS has published a joint statement from rare disease community members and organisations, calling upon the European Union to establish a multi-stakeholder Newborn Screening Group to support Member States in strengthening NBS programmes.

Rare Barometer survey results launch webinar: The mental health of people living with a rare or undiagnosed condition and their family members May 2026

The findings from our most recent Rare Barometer survey were presented during the webinar held on 18 June “Living well: The mental health of people living with a rare or undiagnosed condition and their family members”, led by Jessie Dubief, EURORDIS Social Research Director and Rare Barometer Programme Lead. https://www.eurordis.org/rare-barometer-results-webinar/