News & Updates
Help Shape the Future of Rare Disease Evidence Generation!
Join Our Upcoming Webinar: Putting Patients at the Center of Rare Disease Clinical Trials
A short webinar to launch a new, friendly guide to Equality, Diversity and Inclusion (EDI) in Public and Patient Involvement (PPI).
The training responds to the growing need for patient advocates to understand data management, ethical considerations and the role of AI in rare disease research.
The two-day event will focus on translating research and policy initiatives into tangible benefits for Rare Disease patients through better prevention, diagnosis, and treatment.
Join the leading international drug repurposing conference to explore the future of patient-centric medicines repurposing!
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.
Shaping the future of rare disease research: insights from ERDERA
In this video, members of the ERDERA partnership reflect on what has been achieved so far, what the initiative represents for the wider rare disease research ecosystem, and the impact it is expected to have in the years ahead.
Hear insights from James Levine, Daria Julkowska, Bojana Mirosavljevic, and Milan Macek as they share their perspectives on collaboration, progress, and the future of rare disease research in Europe and beyond.
ERDERA’s Networking Support Scheme – Ethics Self Assessment Tutorial
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.
Together4RD x ERDERA: Launch of the Toolkit for Public-Private Partnerships in Rare Disease Research
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.
Rare Disease Community | Tomasz Grybek
🗣 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.
Rare Disease Community | Dorica Dan
🗣 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.
Rare Disease Community | Alexandre Méjat
🗣 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.
Our mission | Daria Julkowska, ERDERA Scientific Coordinator
For millions of people, rare diseases are more than just statistics—they are daily challenges, unanswered questions, and battles for better care. At ERDERA, our mission is simple but urgent: to improve the lives of over 30 million people living with rare diseases in Europe. In this video, Daria Julkoska, ERDERA’s Coordinator, explains the three essential ways how ERDERA plans to work towards a brighter future for people living with rare diseases.
ERDERA | The European Rare Diseases Research Alliance
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.