Tag: EURORDIS–Rare Diseases Europe

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Joining the Dots: EURORDIS’ role in ERDERA and the reshaping of rare disease research

EURORDIS champions patient-centred innovation in rare disease research
HLM Rare Diseases Brussels 2025

HLM Rare 2025 in Brussels: forging a European Declaration for rare and complex diseases

Three days in Brussels help advance the European Declaration on Rare and Complex Diseases
are Diseases in a Changing & Competitive Europe: Shaping policies to address the unmet needs of people living with rare diseases

13th European Conference on Rare Disease and Orphan Drugs

The European Conference on Rare Diseases & Orphan Products (ECRD) is the largest patient-led policy-shaping event on rare diseases in Europe.
Rare Disease Day 2026 banner

Unity in action: Rare Disease Day 2026 campaign launches with a renewed focus on equity

A global movement, coordinated by EURORDIS in partnership with 72 national alliances, amplifying representation and accelerate fair access to diagnosis, care and research.
Open Academy Schools 2026: applications open 8 September 2025

Open Academy Schools 2026: applications open 8 September 2025

A new edition of “Navigating Rare Disease Research: Data, Ethics and AI in Europe” will follow suit
Collaboration - Open Academy Schools 2025 High engagement, deeper impact

Applications for Open Academy Schools 2026

Tomasz Grybek

“ERDERA could become a model of how to align large-scale, cross-border research with real patient needs, so that the knowledge gained is translated into tangible benefits”

Erdera interviews Tomasz Grybek, patient representative and caregiver
Tomasz Grybek

Rare Disease Community | Tomasz Grybek

EU rare disease conference concludes in Warsaw with renewed focus on early diagnosis and collaborative research

EU rare disease conference concludes in Warsaw with renewed focus on early diagnosis and collaborative research

Representatives from patient organisations advocated for robust data platforms and research partnerships
Rare Disease conference kicks off in Warsaw

Rare Disease conference kicks off in Warsaw: Building momentum for a unified EU strategy

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