Tag: Patient Public Involvement and Engagement (PPIE)

World Orphan Drug Congress USA 2026

World Orphan Drug Congress USA 2026

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.
High-Level Meeting on European Research and Innovation for Rare Diseases

High-Level Meeting on a European Research and Innovation Ecosystem for Rare Diseases

Gathering key stakeholders, including EU policymakers, industry leaders, patient advocacy groups, researchers, and healthcare providers. Its goal is to identify concrete actions and incentives to enhance innovation across the rare disease ecosystem.
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.
P066986-205445

Survey re-opened: help pinpoint where consultancy makes the biggest difference in rare disease research

Community input invited on practical consultancy needs in rare disease research.
EDERA WODC & GAM - Preview- JVDPhotography-1-min

ERDERA at WODC Europe 2025: wrap up and next steps

Sharing patient‑centred methods, early diagnostics, and data‑driven trial innovation to accelerate rare disease research across Europe.
WODC27102025

ERDERA’s workshop draws strong engagement at WODC Europe

Enhancing active patient involvement and data models across rare disease research.
ERDERA group photo from the workshop

Multi stakeholder workshop advances prioritisation of rare diseases for ATMP development

A practical framework in the making
International Patient Organisation for Primary Immunodeficiencies IPOPI

Patients as equal partners – ERDERA’s vision echoes in Brussels

ERDERA's

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