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

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The Joint Transnational Call 2026 is

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now open!

ERDERA Survey

Exploring consultancy needs for rare disease research

LATEST

News & Updates

Launching a New Guide to EDI/Inclusion in PPI

A short webinar to launch a new, friendly guide to Equality, Diversity and Inclusion (EDI) in Public and Patient Involvement (PPI).

Shaping the future of rare disease research: insights from ERDERA

Launched in September 2024, ERDERA is already building strong momentum across the rare disease research landscape.

IRDiRC launches call for experts for four new rare disease activities

Rare disease researchers, clinicians, patient advocates and data experts are invited to help shape four new IRDiRC activities linked to the new IRDiRC Roadmap, with applications closing on 20 February 2026.

New survey launched to improve rare diseases clinical trial enrolment

The RealiseD project launched a new multi-stakeholder survey that invites the rare disease community to share insights and help improve clinical trial enrolment

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 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

Feb
03
Tuesday,
05:00 pm-06:30 pm
online

Help Shape the Future of Rare Disease Evidence Generation!

Feb
10
Tuesday,
05:00 pm-06:30 pm
online

Join Our Upcoming Webinar: Putting Patients at the Center of Rare Disease Clinical Trials

Feb
25
Wednesday,
01:00 pm-02:00 pm
online

A short webinar to launch a new, friendly guide to Equality, Diversity and Inclusion (EDI) in Public and Patient Involvement (PPI).

Mar
02
- 01
Jul
Monday,
8:00 am - 5:00 pm
hybrid

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.

Mar
05
- 06
Mar
Thursday,
All day
onsite
Cyprus Institute of Neurology and Genetics, Nicosia

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.

May
12
- 13
May
Tuesday,
All day
onsite

Join the leading international drug repurposing conference to explore the future of patient-centric medicines repurposing!

NEWSLETTER

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