News & Updates
This information webinar on the 2026 Joint Transnational Call for Proposals is scheduled for 16 December 2025, 15:00–17:00 CET, focusing on resolving unsolved rare genetic and non‑genetic diseases.
The next ECRD will take place on 3–4 June 2026 in Prague under the title “Rare Diseases in a Changing & Competitive Europe: Shaping policies to address the unmet needs of people living with rare diseases”.
More than 280 speakers from industry, regulators, patient organisations, investors and healthcare providers, and aims to showcase new science, technologies and policies that can accelerate orphan drug development and improve access to therapies for people living with rare conditions.
🗣 Throughout the week leading to Rare Disease Day 2025, we will be sharing insights from diverse voices highlighting key pathways to improving the lives of those affected. ️
Tomasz Grybek, carer, patient advocate, and Member Board of Directors of EURORDIS – a remarkable alliance of over 1,000 rare disease patient organisations from 74 countries – reminds us of the incredible strength and unity within the rare disease community.
Understanding the Ethics Self-Assessment Table for Networking Support Scheme Proposals 🧩 Are you preparing a proposal for the Networking Support Scheme?
This tutorial walks you through how to accurately complete the Ethics Self-Assessment Table, adapted from the Horizon Europe template.
Completing Section 9 for any other ethical issues relevant to your proposal ✅ Whether you’re new to the application process or just need a refresher, this step-by-step guide will help ensure you meet the ethical requirements of your submission. 📌 Don’t forget to like, share, and subscribe for more guidance on EU funding calls and application processes.
The #Together4RD Toolkit is a new strategic resource to support effective, transparent, and impactful ERN-industry collaborations in #RareDisease research. Developed with input from both #ERN and industry, the Toolkit offers practical guidance, case studies, and tools to tackle legal, structural, and practical barriers to public-private partnerships.
🗣 Throughout the week leading to Rare Disease Day 2025, we will be sharing insights from diverse voices highlighting key pathways to improving the lives of those affected. ️
In this video, Dorica Dan, rare disease carer and EURORDIS-Rare Diseases Europe Vice-Director, highlights the profound importance of early diagnosis for people living with a rare disease and their families – even when no treatment is available. 🔍
🗣 Throughout the week leading to Rare Disease Day 2025, we will be sharing insights from diverse voices highlighting key pathways to improving the lives of those affected. ️
In this video, Alexandre Méjat, a rare disease patient, PhD scientist in the field of rare diseases, and EURORDIS Director, shares his invaluable insight on the vital role of data collection in achieving quicker diagnoses. 📊⏱
To leave no one behind, over 170 organisations championed by the European Union and members states are working hand in hand to make Europe a world leader in rare diseases research and innovation. The European Rare Disease Research Alliance (ERDERA) takes over EJPRD to deliver concrete health benefits to rare disease patients in the next decade by advancing prevention, diagnosis and treatment research.