Aporte a la rutina de la trinchera asistencial donde los conocimientos se funden con las demandas de los pacientes, sus necesidades y las esperanzas de permanecer en la gracia de la SALUD.
jueves, 12 de febrero de 2026
THE GLOBAL ALLIANCE OF PERSONS LIVING WITH A RARE DISEASE +++
https://www.rarediseasesinternational.org/
European Blueprint
EURORDIS and Rare Diseases International (RDI) are inviting patient organisations, advocates, and other stakeholders from across the WHO European Region to join our European Regional Task Force on Rare Diseases. This group will gather evidence, experience, and expertise to help shape our development of a European Blueprint for Rare Diseases, to be launched at our European Conference on Rare Diseases and Orphan Products (ECRD 2026). Apply now!
Developing a European Blueprint for Rare Diseases: How this work will unfold
February 2026
EURORDIS-Rare Diseases Europe is leading a multi-stakeholder initiative to develop a European Blueprint for Rare Diseases – a detailed design for how rare disease policy can be structured, coordinated, and delivered in practice.
https://www.eurordis.org/blueprint-for-rare-diseases-coordinating-action-across-europe/
European Regional Task Force on Rare Diseases – Expression of Interest
Rare Diseases Europe (EURORDIS), in collaboration with Rare Diseases International (RDI), is establishing the European Regional Task Force on Rare Diseases to bring together stakeholders from across the WHO European Region.
https://forms.office.com/pages/responsepage.aspx?id=uv_BBwRMtkK5WUPa44YsSg_8cYkfEgFJkfThrO_639NUQTQ4SkUyNDFSQ1FCM0g2OE5FU0pZT05IOC4u&route=shorturl
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