Advancing prevention, diagnosis and treatment research for the 30 million people living with a rare disease in Europe.

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Look for ERDERA's booth at the

World Orphan Drug Congress

in Amsterdam More Info

Open Session

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Join ERDERA’s

Join the free and online public session on 30th of October

Connected for impact:

2nd International Conference on Clinical Research Networks

9 & 10 December 2025 More Info

ERDERA Funding

The 2026 Joint Transnational Call
Pre-Announcement is now live!

LATEST

News & Updates

ERDERA’s workshop draws strong engagement at WODC Europe

Enhancing active patient involvement and data models across rare disease research.

ERDERA workshop to widen participation of underrepresented countries in rare disease research

20–21 November — A practical ERDERA workshop to connect researchers, clinicians, patients and funders from underrepresented countries to strengthen capacity for inclusive rare disease research.

Networking of underrepresented countries for the enhancement of rare disease research

Presenting new evidence from an ERDERA survey across more than 30 countries and co‑create practical solutions to improve inclusion, networking and capacity development.

Information Webinar – ERDERA Joint Transnational Call 2026

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 through variant validation and new technological approaches.

ERDERA

Research Services

our mission

Goals & Impacts

Unify knowledge, resources and expertise

ERDERA brings under one roof a broad range of high-value services, resources and cross-disciplinary expertise to support rare disease research projects across Europe, from planning and design to efficient execution.

Boost clinical research with and for patients

Enabling every consenting patient living with a rare disease to be findable and enrolled in a suitable clinical study that matches their needs and preferences is a core goal in ERDERA. Empowered patients can contribute to the generation of high-quality evidence to improve diagnosis, understanding of diseases and develop treatments.

Spur innovation and EU competitiveness

The new partnership aims to make Europe a global leader in rare disease research by increasing investment to spur innovation, aligning regional, national and European research strategies, and fostering collaboration among all stakeholders at global scale.

Upcoming Events

Oct
27
- 28
Oct
Monday,
All day
On-site event
RAI Convention Center, Amsterdam

We’re pleased to announce that ERDERA will be attending #WODC2025 in Amsterdam on 27–28 October, driving collaboration and advancing research in the field of rare diseases. Come and visit us […]

Oct
30
Thursday,
09:00 am-11:20 pm
Online event

ERDERA will mark its 1st anniversary with a stimulating online event open to the entire rare disease community. Leading experts in the field of neurology, neurometabolic diseases and patient advocacy […]

Nov
03
- 04
Nov
Monday,
All day
Online event

The course will focus on the current status and advancements of clinical research especially to address unmet medical needs. Innovative methodologies, regulatory challenges, and the involvement of adolescents in clinical trials will be discussed.

Nov
14
- 16
Nov
Friday,
All day
On-site event
Sabancı Cultural Center, Izmir

Bringing together global experts, healthcare professionals, patient advocates, and policymakers to advance knowledge and strengthen international collaboration in the field of rare diseases.

Nov
20
- 21
Nov
Thursday,
9:00 am - 1:00 pm
online

Presenting new evidence from an ERDERA survey across more than 30 countries and co‑create practical solutions to improve inclusion, networking and capacity development.

Dec
09
- 10
Dec
Tuesday,
All day
On-site event

ERDERA – the European Rare Diseases Research Alliance – is pleased to announce the upcoming 2nd International Conference on Clinical Research Networks (CRNs) for Rare Diseases, co-organised in collaboration with […]

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