THE EUROPEAN PLATFORM FOR MEDICINES REPURPOSING

https://remedi4all.org/ REMEDi4ALL, a drug repurposing project in which EURORDIS is a partner, is offering two upcoming opportunities: a Repurposing Bootcamp for patient representatives in Paris on 2–3 November, covering regulatory pathways, clinical trials and patient engagement; and a Hackathon bringing together innovators, researchers and patient advocates. Applications for the bootcamp close on 10 June. Repurposing Bootcamp for Patient Representatives Increase Your Knowledge and Skills in Drug Repurposing 2-3 November 2026 Paris, France https://remedi4all.org/repurposing-bootcamp-for-patient-representatives-2026/ Remedi4all Hackathon https://remedi4all.org/resources/remedi4all-repurposing-academy/remedi4all-hackathon/

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

https://www.eurordis.org/rare-barometer-results-webinar/ The findings from our most recent Rare Barometer survey will be presented during the webinar “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. Join us to explore what the new findings reveal, and how they can help shape rare disease policy discussions across Europe. 🗓️ Date: 18 June 2026 Join our Rare Barometer team on 18 June 2026 for a webinar revealing the results of its recent survey on the mental health and wellbeing of people living with a rare or undiagnosed condition, and their family members. The findings provide important insights into wellbeing, support systems and unmet needs across the rare disease community. https://www.eurordis.org/rare-barometer/english/

ECRD Media Partners ++++

https://euperspectives.eu/ We are very grateful to the official Media Partners of ECRD 2026: Rare Revolution Magazine, Rare Disease and Orphan Drugs Journal, The Parliament Magazine, Zdravotnický deník and EU Perspectives. Together, they are helping us build momentum around rare disease policy, research, innovation and access to care ahead of our conference on 3–4 June 2026. We encourage you to explore their work! https://rarerevolutionmagazine.com/ https://www.oaepublish.com/rdodj https://www.theparliamentmagazine.eu/ https://www.zdravotnickydenik.cz/

Second Join4ATMP Webinar in 2026 Series May 2026 - Join4ATMP Roadmap & Recommendations for Patient Involvement in ATMP Clinical Trial Design 🗓️ Date: 15 June 2026

https://www.eurordis.org/second-join4atmp-webinar-in-2026-series/ Join4ATMP continues its 2026 webinar series with a second session on 15 June focused on presenting and exploring the Join4ATMP roadmap. Building on discussions from the first webinar, participants will help shape practical recommendations for more patient-centred ATMP clinical trials, bringing together patients, researchers and developers to exchange perspectives and experiences. https://www.join4atmp.eu/ DRIVE EUROPEAN ACTIVITIES FOR ADVANCED THERAPY MEDICINAL PRODUCT DEVELOPMENT AND IMPLEMENTATION

EURORDIS welcomes key gains for patients in agreement on EU Critical Medicines Act May 2026 ++

https://www.eurordis.org/eurordis-welcomes-key-gains-in-cma-agreement/ EURORDIS welcomes key gains for patients in agreement on EU Critical Medicines Act May 2026 12 May 2026, Brussels – EURORDIS–Rare Diseases Europe today welcomes the provisional agreementreached between the European Parliament and the Council of the EU on the Critical Medicines Act (CMA), a Regulation designed to strengthen the security of supply and availability of medicines across the European Union. https://health.ec.europa.eu/medicinal-products/critical-medicines-act_en

Jean Saslawsky appointed Chief Executive Officer of EURORDIS April 2026

Jean Saslawsky appointed Chief Executive Officer of EURORDIS April 2026 29 April 2026, Paris – EURORDIS-Rare Diseases Europe today announces the appointment of Jean Saslawsky as its next Chief Executive Officer. The decision was made unanimously by the EURORDIS Board of Directors following a competitive international recruitment process. Jean will take up the role on 1 June 2026. https://www.eurordis.org/jean-saslawsky-announced-next-ceo-eurordis/

Beyond diagnosis and treatment: Delivering holistic care for people living with rare diseases May 2026 +++

Beyond diagnosis and treatment: Delivering holistic care for people living with rare diseases May 2026 Living with a rare disease impacts every aspect of a person’s life, from education and employment to mental health and social participation. Yet, regardless of whether someone receives a diagnosis or access to treatment, health and social care systems often fail to support them. https://www.eurordis.org/beyond-diagnosis-and-treatment-delivering-holistic-care-for-people-living-with-rare-disease/ How can Europe improve quality of life for people living with a rare disease beyond access to diagnosis and therapies? Our latest article explores three areas where European healthcare systems consistently fall short: building the evidence base for holistic care, addressing the mental health challenges that affect patients and families at every stage, and removing the barriers that prevent people from reaching the specialist expertise they need. These are the focus of the Evidence-Based Holistic Care, Mental Health and Specialised Healthcare tracks at our European Conference on Rare Diseases and Orphan Products (ECRD 2026), taking place on 3–4 June in Prague and online. https://www.rare-diseases.eu/ Registrations remain open for attending ECRD 2026 online https://events.eurordis.org/ecrd2026/register-now