Category: Patient Involvement (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.
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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)
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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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One month to go: register now for the 2nd International Conference on Clinical Research Networks

9-10 December, Heidelberg and online — last places for in person attendance; free livestream for registered participants.
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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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ERDERA Open Session: science and advocacy align to advance rare disease research and care

Amsterdam and online, convening clinicians, scientists and advocates to share progress and the power of patient led policy to improve diagnosis and care.
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