Category: Patient Involvement (PPIE)

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
CRN Conference Group Photo

Clinical experts and patient advocates gather in Heidelberg to turn discussion into action on global rare disease research

From shared standards to local impact, the 2nd Clinical Research Networks Conference agreed concrete next steps for interoperable clinical research networks worldwide
ERDERA JTC2026

ERDERA launches 2026 Joint Transnational Call on diagnostics for unsolved rare diseases

Call now open; preproposals due 12 February 2026
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.
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European Conference on Rare Diseases and Orphan Products, June 2026, Prague

The next ECRD will take place on 3–4 June 2026 in Prague under the title “Rare Diseases in a Changing & Competitive Europe: Shaping policies to address the unmet needs of people living with rare diseases”.
SANT Launches Public Consultation on Rare Diseases

EU consultation on disability rights seeks evidence to strengthen inclusive research and data ecosystems

Inviting views on how a stronger EU disability strategy up to 2030 can support inclusive research, data sharing and innovation.
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.
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.
Emine Eylul Taksin

“By supporting more joint projects and research partnerships, Türkiye’s National Mirror Group can help ensure that the country’s scientific strengths translate into tangible benefits for patients”

ERDERA interviews Emine Eylül Taşkın, Project Manager at ERDERA and at the İzmir Biomedicine and Genome Center (IBG)
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.
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