Latest News View all news Advocacy in action at Rare Disease Week News We highlight the empowering experiences of past participants at Rare Disease Week, where advocates reflect and share their aspirations for... François Houÿez: Improving how new treatments are assessed across Europe Staff Blog Our Information & Access to Therapies Director & Health Policy Advisor calls for patient-centred improvements to Europe’s new treatment assessments. 4th International Scientific-Medical V4-CF Conference to take place in November Member's Comment This Member Comment article was shared with EURORDIS by our member organisation, the MATIO Fundacja Pomocy Rodzinom i Chorym na... Embracing differences: Sophie Turner’s journey with dwarfism, advocacy, and self-identity Community Sophie Turner talks to us about mental health advocacy and self-identity in a world that often stigmatises physical differences. Julien Delaye: Strengthening conflict of interest management in European Health Technology Assessments Staff Blog Our Patient Engagement Manager for Health Technology Assessment shares ways to improve conflict of interest management in European HTAs. EURORDIS: EESC right to reaffirm call for European Action Plan for Rare Diseases Press release 23 October 2024, Brussels – EURORDIS-Rare Diseases Europe today warmly welcomes the European Economic and Social Committee’s (EESC) adoption of... EURORDIS welcomes European Parliament’s defence of investment in EU health projects Press release EURORDIS responds to the European Parliament's latest vote on the European Commission's 2025 budget. Understanding the European Health Data Space: Part One News The EURORDIS Patient Health Data programme has been made possible through the generous support of Fondation Ipsen, under the aegis of Fondation... Launch of the Patient Partnership Hub: Enhancing Patient-Clinician Collaboration in Healthcare News EURORDIS launches an online platform to support the implementation of patient partnership. ERDERA 101: Europe’s New Chapter in Rare Disease Research News We break down everything that Europe’s rare disease community needs to know about this milestone research partnership. Keep up to date with the latest news, events, and campaigns from EURORDIS Subscribe
