News & Updates
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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.
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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”.
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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.
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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.
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The World Orphan Drug Congress is the largest orphan drug & rare disease meeting of its kind across the globe. From cell and gene therapy, genetic testing, and market access, to real world […]
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Building on the legacy of the RE(ACT) Congress series (now reaching its ninth edition), RE(ACT) continues to serve as a meeting point for scientific innovation and real-world impact. The Congress brings together international leaders, renowned experts, […]
Aligning Countries for Rare Disease Research | ERDERA meeting in Sofia
Key takeaways from ERDERA’s first in-person meeting uniting countries on rare disease research. Read more here.
The Health Research Podcast – Ep 6: Rare Disease Research
This episode features Dr Avril Kennan Chief Executive of Health Research Charities Ireland, Dr Gráinne Gorman Chief Executive of the Health Research Board, and Gavin Lawler, HRB Programme Manager and co-ordinator of the Irish National Mirror Group on Rare Diseases.
Victoria Hedley explains the role of National Mirror Groups in the rare disease research ecosystem
Victoria has spent the past 15 years contributing to the development of rare disease (RD) policies and policy‑related outputs, and is a founder and co‑lead of the Newcastle Centre for Rare Disease. Her current work includes leading activities within the European RD Research Alliance (ERDERA) to establish and mobilise National Mirror Groups for rare diseases; serving as co‑lead for the Coordinating Hub of the Rare Disease Research UK platform; and providing Newcastle University leadership for the Work Package on Impact, Regulation, and International Engagement within the LifeArc Centre for Acceleration of Rare Disease Trials.
In this video, Victoria Hedley explains the role of National Mirror Groups in the rare disease research ecosystem.
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.