International Congress on Rare Diseases and Orphan Drugs Athens and online

Under the theme "Navigating the Uncharted: Advancements, Collaborations, and Hope in Rare Diseases", the International Congress on Rare Diseases and Orphan Drugs aspires to stimulate dialogue and cooperation across all stakeholders – patient representatives, policymakers, clinicians, researchers, industry, payers and regulators – towards advancing a comprehensive rare disease strategy that promotes sustainability and equity within healthcare ecosystems.

The current policy momentum, along with regulatory and digital health evolution in the European Health Ecosystem, provides a significant opportunity for co-creation and concrete solutions to address the unmet needs of rare disease patients in the foreseeable future.

Utilizing the experience and knowledge of international partners, the conference will engage in dialogue about current political developments in Europe and the formulation of a National Strategy for Rare Diseases. The ultimate goal is to create and implement the National Action Plan for Rare Diseases within 2024.

The topics of discussion include:

  • The Policy Landscape on Rare Diseases
  • ATMPs in the New Pharmaceutical Strategy for Europe
  • New Regulatory Models for Orphan Drugs
  • Defining and Measuring Unmet Needs in Rare Diseases, a European Discussion
  • RWE for informed and impactful Decision Making
  • Access and Reimbursement Strategies for Orphan Drugs in Europe
  • Innovations in Rare Disease Therapeutics
  • European Reference Centers (ERNs) in the National Health Systems and their Research Potential


Interested in joining the event? Contact