Project description
Making great strides in rare disease treatment
Rare diseases affect over 30 million people in the EU, posing major challenges in diagnosis, treatment and equitable access to care. In this context, the EU-funded CY26-RARE project is supporting a high-level conference that aims to strengthen collaboration, foster innovation and drive progress in the field of rare disease treatment. The conference takes place over two days, featuring over 30 renowned speakers and involving more than 200 participants from across Europe and beyond, from multiple sectors: these include health/research authorities, EU agencies, clinicians, researchers, representatives from the pharmaceutical and biotech industries, patient and advocacy groups and legal/ethical specialists. The conference will serve as a major platform for dialogue, strategy and collaboration.
Objective
Rare Diseases (RDs), often called orphan diseases, are a diverse group of disorders that collectively affect a significant number, approximately 30 million people in EU. The majority of rare diseases have a genetic origin and encompass a wide range of pathological conditions, many of which are chronic, debilitating and may shorten lifespan. Due to the rarity, complexity and the limited available knowledge, rare diseases pose significant challenges in terms of diagnosis, treatment and access to specialised care. Efforts to address rare diseases involve multidisciplinary collaboration, innovative research and policy initiatives aimed at improving outcomes for affected individuals. Moreover, the socioeconomic impact of rare diseases at the individual, health care and societal levels is significant, but in countries with centralised healthcare systems, the cost is spread out given the rarity of theses diseases.
The proposed high-level conference on the advancement of treatments for rare diseases (RD) within the EU, will be organised under during the Cyprus Presidency of the Council of the European Union, as one of the of the Presidency events. The conference aims to strengthen collaboration, foster innovation, and drive development in the field of rare diseases management. The conference will highlight the goal of making Europe “the global beacon for life sciences by 2030”, support concrete health benefits to rare diseases patients, through better prevention, diagnosis and treatment. This two-day event will focus on promoting excellence, innovation, collaboration and synergies on treatments for rare diseases.
Fields of science (EuroSciVoc)
CORDIS classifies projects with EuroSciVoc, a multilingual taxonomy of fields of science, through a semi-automatic process based on NLP techniques. See: The European Science Vocabulary.
This project's classification has been human-validated.
CORDIS classifies projects with EuroSciVoc, a multilingual taxonomy of fields of science, through a semi-automatic process based on NLP techniques. See: The European Science Vocabulary.
This project's classification has been human-validated.
Keywords
Project’s keywords as indicated by the project coordinator. Not to be confused with the EuroSciVoc taxonomy (Fields of science)
Project’s keywords as indicated by the project coordinator. Not to be confused with the EuroSciVoc taxonomy (Fields of science)
Programme(s)
Multi-annual funding programmes that define the EU’s priorities for research and innovation.
Multi-annual funding programmes that define the EU’s priorities for research and innovation.
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HORIZON.2.1 - Health
MAIN PROGRAMME
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HORIZON.2.1.3 - Non-Communicable and Rare Diseases
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Topic(s)
Calls for proposals are divided into topics. A topic defines a specific subject or area for which applicants can submit proposals. The description of a topic comprises its specific scope and the expected impact of the funded project.
Calls for proposals are divided into topics. A topic defines a specific subject or area for which applicants can submit proposals. The description of a topic comprises its specific scope and the expected impact of the funded project.
Funding Scheme
Funding scheme (or “Type of Action”) inside a programme with common features. It specifies: the scope of what is funded; the reimbursement rate; specific evaluation criteria to qualify for funding; and the use of simplified forms of costs like lump sums.
Funding scheme (or “Type of Action”) inside a programme with common features. It specifies: the scope of what is funded; the reimbursement rate; specific evaluation criteria to qualify for funding; and the use of simplified forms of costs like lump sums.
HORIZON-CSA - HORIZON Coordination and Support Actions
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Call for proposal
Procedure for inviting applicants to submit project proposals, with the aim of receiving EU funding.
Procedure for inviting applicants to submit project proposals, with the aim of receiving EU funding.
(opens in new window) HORIZON-HLTH-2025-06-IBA
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Net EU financial contribution. The sum of money that the participant receives, deducted by the EU contribution to its linked third party. It considers the distribution of the EU financial contribution between direct beneficiaries of the project and other types of participants, like third-party participants.
2371 AGIOS DOMETIOS
Cyprus
The total costs incurred by this organisation to participate in the project, including direct and indirect costs. This amount is a subset of the overall project budget.