European Rare Disease Conference Calls for Stronger Cooperation Across Member States

7 Jul, 2026

On 3–4 June 2026, the 13th edition of the European Conference on Rare Diseases and Orphan Products took place in Prague.The conference served as a call to action for all stakeholders to work together through networking and collaboration. It offered an important opportunity to build relationships and share knowledge both within and beyond the rare disease community.Representatives of patients, policymakers, researchers, clinicians, healthcare professionals, pharmaceutical companies, academics, payers, regulators, and Member States attended the event.A wide range of topics were explored, from the legislative regulation of medical devices to the dissemination of innovative diagnostic technologies capable of overcoming governmental, legislative, and healthcare barriers across different countries.Participants emphasised the need for shared responsibility among European Member States, underpinned by stronger cooperation.The involvement of patient representatives in working groups was highlighted as essential for the effective implementation of healthcare policies for rare diseases.The conference also underscored the importance of building a coherent European healthcare framework to better address rare diseases.There were calls for the expansion of newborn screening programmes to enable broader access to innovative therapies for a larger proportion of the rare disease population.The event concluded by stressing the importance of data collected by patient organisations in guiding healthcare policies for rare diseases, particularly through targeted and dedicated funding initiatives.An important moment was the workshop on the European Blueprint for Rare Diseases, held on 2 June. During this session, the draft of the future European Plan for Rare Diseases was presented. The plan is scheduled for publication in September 2026.IMP is grateful to Dora Cozzoli from Mitocon, who attended ECRD online on behalf of International MITO Patients.