Tag: Patient Public Involvement and Engagement (PPIE)

Rare Disease Day 2026 visual representation

One year of ERDERA: the European alliance built to accelerate rare disease research reports first results

28 February, across Europe and beyond: one year into delivery, ERDERA is advancing towards shorten diagnostic journeys and improved therapies for people living with a rare disease.
Black Pearl Awards

EURORDIS Black Pearl Awards 2026: celebrating rare disease champions in Brussels and online

On 24 February, in Brussels and online, EURORDIS will bring the rare disease community together for its fifteenth Black Pearl Awards ceremony, held in the lead‑up to Rare Disease Day.
European Medicines Agency (EMA)

ICH opens consultation on draft E22 guidance for patient preference studies

A draft ICH E22 guideline on patient preference studies is now open for public comment via the European Medicines Agency until 12 April 2026.
webinar

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).
Advancement of Treatments for Rare Diseases

Advancement of Treatments for Rare Diseases

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

EURORDIS champions patient-centred innovation in rare disease research
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.
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