Description
About the Conference
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, 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.
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 2024.
Main Streams will focus on:
The Policy Landscape on Rare Diseases
ATMPs in the New PharmaceuticalStrategy 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
Building a Holistic and Supportive Ecosystem for Rare Diseases
Navigating Access Pathways for Orphan Drugs in Greece
RD Patients Registry and the value of data in Decision Making
Working together for a Sustainable Future – SFEE Rare Diseases Task Force
Strategic Planning for Rare Diseases in Greece and the Greek National Action Plan
Foresing 2030 – Stay on top of the biggest the initiatives that will change the RD landscape!
More information and agenda