About the Conference
The 6ᵗʰ International Conference on Rare Diseases is organized by Rare Diseases Greece (RDG), member of EURORDIS-Rare Diseases Europe and Boussias Events.
Rare diseases impact over 300 million people worldwide, yet systemic challenges persist—delayed diagnoses, fragmented care, and limited access to life-saving treatments. This conference unites leading international and national experts, researchers, global leaders from academia, healthcare professionals, policy-makers, industry leaders and patient representatives, to advance one shared mission: “Building a brighter future together — Transforming the challenges of Rare Diseases into national and international opportunities.”
Following the success of the previous years, this year’s event will highlight Greece’s growing role as a hub for health innovation and cross-border collaboration in rare diseases, offering an inclusive platform for dialogue and action across Europe and beyond, exploring how cooperation among governments, scientific communities, and patient organizations can accelerate access to diagnosis, treatment, and sustainable care for people living with rare conditions.
The agenda will combine scientific excellence with policy relevance—addressing innovation, digital health, patient empowerment, and health system resilience, while emphasizing Greece’s commitment to European and international cooperation in the field of rare diseases.
Be Part of the Change! Join us in Athens Greece for a truly global meeting that celebrates collaboration, innovation and hope. Together, we can transform rare disease challenges into opportunities — nationally and internationally.
Key Topics Include
Reflecting both European priorities and international trends, the conference will focus
on a range of pressing and emerging issues, including:
Day 1
Opening & Global Landscape and the WHA Resolution
- Global priorities in rare diseases
- WHO actions
- International collaborations and country implementation models
- ERDERA Evolution
- 1. Regulatory Science & Innovation Pathways
- 2. Therapeutic Development & Evidence Generation
- 3. ERNs Integration Challenges and Opportunities
- 4. Access, HTA & Health-System Preparedness
- EMA developments and the New Regulation
- Policy Multistakeholder initiatives
- Biotech Act / Value & Access
- Advances in gene, RNA, and cell therapies
- Designing trials for ultra-rare conditions
- Real-world evidence and digital health tools
- Integration of ERNs into national systems (lessons from JARDIN)
- Cross-ERN collaborations (data, diagnostics, ePAGs, education)
- Future of European HTA (EUnetHTA 21 → JCA implementation)
- Country preparedness for JCA and national decisions
- Role of patient evidence and structured input
Each topic will be designed to move from knowledge to action, ensuring that discussions lead to tangible outcomes.
Day 2
Opening – Greece in the European Rare Disease Ecosystem
- National initiatives and Status Update: Rare Disease Registries, Orphanet Greece, JARDIN, Rare Diseases Map
- 1. The need for a National Programme “Genetic Care for All”
- 2. JARDIN – Strengthening Greece’s Role in ERNs and CTs (2025–2027)
- 3. ERDERA & the Greek Research Capacity: Connecting Greece with Europe
- 4. Data, Orphacodes & Digital Readiness
- 5. Access & HTA – Preparing Greece for JCA
- Strategic framework for genetic care and prevention
- Newborn screening, carrier screening, and access to molecular diagnostics
- Ensuring equity and national coherence in genetic services
- Increasing participation to ≥18 ERNs and Jardin
- Full adoption of Orphacodes and improved CPMS/registry engagement
- Establishing a national coordination mechanism for ERNs
- How ERNs can promote CTs in Rare Diseases
- ERDERA as the major European rare disease research initiative Creation of the National Mirror Group (NMG) and its strategic role
- Evaluating the potential of an RD Greek Research Hub
- National Rare Disease Registries and European interoperability
- Orphanet Greece and the need for unified classification
- Digital tools such as the Rare Diseases Map (RDG Map) & myHeath@myHands
- Patient input, RWE and HTA readiness
- Evidence generation through ERNs and registries
- Equity and timely access to innovative therapies
Speakers
-TBA-
Keynote Speakers & Panelists
Join an exceptional line-up of international and Greek experts, including:
- Policy-makers and health authorities from the EU and national governments
- Renowned researchers, clinicians and academics in rare disease science
- Industry pioneers in pharmaceuticals, biotechnology, and medical technology
- Leaders of European and global patient organisations and alliances
- Health economists, HTA experts and digital innovators
Expect voices from EURORDIS, EPF, INSERM, EJP RD, national rare disease institutes, and leading Greek universities and hospitals.
Who should Attend?
This conference welcomes a broad and diverse audience of professionals and advocates working to improve the lives of people with rare diseases, including:
- Researchers and academics from biomedical and clinical sciences
- Healthcare professionals: doctors, geneticists, pharmacists, nurses, and allied health experts
- National and EU policy-makers, public health officials, and regulators
- Representatives of patient associations and advocacy groups
- Executives and professionals from the pharmaceutical, biotech, and med-tech industries
- HTA, pricing and reimbursement experts, and health economists
- Data scientists, IT specialists, and registry managers
- Students and young professionals interested in rare disease innovation and policy
By gathering these communities in Greece, the conference aims to foster knowledge exchange, partnerships, and cross-border collaboration that extend beyond the event itself.
Why Attend?
The 6ᵗʰ International Conference on Rare Diseases is more than an event — it’s a collaborative platform designed to:
- Exchange cutting-edge knowledge and best practices in rare disease research, policy, and patient care
- Discover emerging therapies, digital health innovations, and cross-border initiatives
- Shape national and international frameworks for rare disease strategy and access to treatment
- Strengthen partnerships between governments, academia, industry and civil society
- Empower patients and families to become active participants in decision-making
Through dynamic sessions, expert discussions, and networking opportunities, participants will leave equipped with new insights, tools and connections to advance the rare disease agenda in their own countries and regions.
What to Expect
Participants in the 6ᵗʰ International Conference on Rare Diseases can expect a dynamic and inspiring experience that combines cutting-edge science, policy insight, and meaningful human stories.
- Plenary sessions featuring international thought leaders and policy makers
- Interactive discussions and roundtables addressing national, European and cross-border challenges
- Networking opportunities to connect with global and regional stakeholders, showcasing the latest research, technologies, and initiatives in rare diseases
- Greek and European perspectives on building a resilient and patient-centered health ecosystem
- Hybrid participation options to enable both on-site and remote attendance
Become a Sponsor
Testimonials
Audiovisual Sponsor
CONEQ provides technical equipment and services to any kind of event. With our Simultaneous Interpretation Systems, Conference Systems, AudioVisual Equipment we support events and provide the best service to our customers. Our professionalism, our high quality of service and state of the art equipment offered to over 600 large and of great significance conferences during the last 5 years have certainly contributed to our constant uptrend. Call us at (+30) 211 2163453. or email us at [email protected]