February 28 (Hybrid) & March 1 (Digital), 2023 | Technopolis City of Athens Gasholder 1 – Auditorium “Miltiadis Evert

Leveraging the momentum for a comprehensive rare disease strategy

The 3rd International Conference on Rare Diseases organized by Rare Diseases Greece (RDG), “95” Rare Alliance Greece and Boussias, following the World Rare Disease Day 2023, will take place on February 28 & March 1, 2023.

Following the success of the previous two years and having advanced the policy agenda on both national and international level, the Organizing Committee – consisting of the Rare Diseases Greece (RDG), the umbrella organization with its 28 members that represent the rare disease community in the country, and the “95” Rare Alliance Greece – brings together all the key initiatives and stakeholders currently shaping the rare disease landscape with the aim to highlight the urgent call to action in adopting a European RD Action Plan and its implementation across Member States.

The current policy momentum, the regulatory and digital health evolution in the European Health Ecosystem provide a big opportunity for co-creation and concrete solutions to rare disease patients’ unmet needs in the foreseen future.


About the Conference

Under the theme “Leveraging the momentum for a comprehensive rare disease strategy”, the 3rd International Conference on Rare Diseases 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.

Taking concrete actions and co-creating policy solutions that respond to the unmet needs of people living with rare diseases will lead to a better future for patients, their families and societies at large.

Utilizing the experience and knowledge of international partners, the conference will open the dialogue with the current political developments in Europe and the drawing up of a National Strategy for Rare Diseases with the ultimate goal of creating and implementing the National Action Plan for Rare Diseases within 2023.


Main Streams will focus on

  1. Policy Landscape on Rare Diseases
  2. Regulatory Ecosystem Evolution
  3. Initiatives Updates (SRIA EJPRD, S4C, ERICA, TOGETHER4RARE, TRANSFORM, MOONSHOT, and others)
  4. Prevention and Early Diagnosis: The Development of prenatal and neonatal screening programs
  5. Development and Integration of the European reference centers (ERNs) in the National Health System
  6. Research, Clinical Trials as part of the care
  7. Patient Data & RWE: Collection of valid and reliable information and the Rare Disease registry
  8. Strategic Planning for Rare Diseases in Greece
  9. RD Patients Registry and the Greek National Action Plan for Rare Diseases
  10. Supporting Education for Patients and Healthcare Professionals



Who should Attend?

Healthcare Stakeholders • Government representatives & officials • Pharmaceutical industry executives (Market Access, Government Affairs, Health Economics) • Public & Private Health services providers • Health economists • Health Policy Experts • Healthcare Professionals • Nurses • Academics • Researchers • Journalists • Patient and Patient Representatives



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Contact us

Registrations & Sponsorships
Chrysoula Kordouli, Τ: +30 210 6617777 (ext. 204), +30 6946236795, E: [email protected]
Info & Content
Natalia Toubanaki, T: +30 210 6617 777 (ext. 289), +30 6947936708, E: [email protected]
Valya Kyritsi, T: +30 210 6617 777 (ext. 227), E: [email protected] 


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