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
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
Express Your Interest
Fill out the interest form to be the first to know about ticket packages and sponsorship opportunities.
Testimonials
Grand Sponsor
Takeda is a leading R&D-driven biopharmaceutical company with a history of more than two centuries headquartered in Tokyo Japan with a presence in 80 countries. and more than 15,500 people working across 37 countries in Europe dedicated to helping patients with limited or no treatment options in our core therapeutic and business areas of gastroenterology and inflammation, rare diseases, plasma derived therapies, oncology, neuroscience, and vaccines. Takeda continues to leverage science and partnerships to develop new therapies that address unmet patient need. In addition, our ambition is to develop and scale personalized, predictive digital health and patient solutions with a value-based partnership approach. What makes Takeda different is our approach to making business decisions, founded on Patient-Trust-Reputation-Business. In every decision, our patients come first. It is this framework that allows us to translate our purpose and values into action every day to ensure patient populations, with unmet needs get access to the adequate treatment.
Sponsors
We at Ardius Pharma are committed to ensuring timely access to high-value therapeutic solutions for patients living with rare diseases in Greece and Cyprus. By providing tailored solutions that address specialized needs, we strive to facilitate seamless and efficient access to rare disease treatments, always placing patients at the center of everything we do.
AstraZeneca (LSE/STO/Nasdaq: AZN) is a global, science-led biopharmaceutical company that focuses on the discovery, development, and commercialisation of prescription medicines in Oncology, Rare Diseases, and BioPharmaceuticals, including Cardiovascular, Renal & Metabolism, and Respiratory & Immunology. Based in Cambridge, UK, AstraZeneca operates in over 100 countries and its innovative medicines are used by millions of patients worldwide.
CSL is a leading global biotechnology company with a dynamic portfolio of lifesaving medicines, including those that treat haemophilia and immune deficiencies, vaccines to prevent influenza, and therapies in iron deficiency, dialysis and nephrology. Since our start in 1916, we have been driven by our promise to save lives using the latest technologies. Today, CSL – including our three businesses, CSL Behring, CSL Seqirus and CSL Vifor – provides lifesaving products to patients in more than 100 countries and employs 29,000+ people. Our unique combination of commercial strength, R&D focus and operational excellence enables us to identify, develop and deliver innovations so our patients can live life to the fullest. For inspiring stories about the promise of biotechnology, visit CSL.com/Vita
GENESIS Pharma is a biopharmaceutical company specializing in the commercialization of innovative pharmaceutical products for serious and rare diseases in Central and Eastern Europe. Established in 1997, GENESIS Pharma was the first pharmaceutical company in Greece and one of the first in Europe to focus on the sales, marketing and distribution of biopharmaceutical products. Shortly after its founding, the company began to steadily expand at a regional level, today covering most countries in the CEE region. Through long-standing strategic partnerships with some of the leading global pharmaceutical companies committed to cutting-edge R&D, GENESIS Pharma has created a strong portfolio of innovative and high therapeutic value pharmaceutical products for more than 30 severe and rare diseases.
INTEGRIS Pharma is a fast-growing Greek pharmaceutical company focused on addressing unmet needs in rare, chronic, and life-threatening diseases through innovative therapies. The company has established 18 international partnerships with leading pharmaceutical companies and has developed a diversified product portfolio across multiple therapeutic areas, including rare diseases, oncology, hematology, wound care and allergology.
Medison created the first global commercialization platform designed to accelerate patient access to breakthrough therapies developed by biotechs, to fulfil our vision of closing the access gap for patients with rare and severe diseases across international markets.
Our Values: Always Ahead, Grow As One, We Care
Founded in 1896 in Basel, Switzerland, Roche has grown into the world’s largest biotechnology company and the global leader in in-vitro diagnostics. The company pursues scientific excellence to discover and develop medicines and diagnostics for improving and saving the lives of people around the world. We are a pioneer in personalised healthcare and want to further transform how healthcare is delivered to have an even greater impact. To provide the best care for each person we partner with many stakeholders and combine our strengths in Diagnostics and Pharma with data insights from the clinical practice
Supporters
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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]