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Call key data
European Partnership on Rare Diseases
|Funding Program||Horizon Europe - Cluster 1 - Destination 3: Tackling diseases and reducing disease burden|
|Call budget||€ 100,000,000.00|
|Estimated EU contribution per project||€ 50,000,000.00|
|Link to the call||ec.europa.eu|
|Link to the submission||ec.europa.eu|
The Partnership should contribute to priorities of the “Communication on effective, accessible and resilient health systems” (COM(2014) 215 final), the “Communication on enabling the digital transformation of health and care in the Digital Single Market; empowering citizens and building a healthier society” (COM(2018) 233 final) and support the objectives of the new EU4Health Programme (COM(2020) 405 final, Regulation (EU) 2021/522).
This partnership should also contribute to achieving the objectives of the Pharmaceutical Strategy for Europe, in terms of fulfilling unmet medical needs (e.g. for rare diseases with so called “orphan medicinal products”) and ensuring that the benefits of innovation reach patients in the EU.
Thanks to its capacity to bring together different stakeholders (e.g. research funders, health authorities, healthcare institutions, innovators, policymakers), the Partnership will create a critical mass of resources and to implement a long-term Strategic Research and Innovation Agenda (SRIA).
The co-funded European Partnership on rare diseases should be implemented based on the priorities identified in the SRIA and through a joint programme of activities ranging from coordinating and funding transnational research to highly integrative and community-driven ‘in-house’ activities such as innovation strategies for the efficient exploitation of research results, EU clinical trial preparedness activities, optimisation of research infrastructures and resources, including networking, training and dissemination activities. It should be structured along the following main objectives:
The Partnership is open to all EU Member States, as well as to countries associated to Horizon Europe and will remain open to third countries wishing to join. The Partnership should include or engage with the following actors:
The Partnership may also encourage engagement with other relevant Ministries and research funders. It should involve other key actors from civil society and end-users, research and innovation community, innovation owners, health and care systems owners/organisers and health and care agencies.
The Partnership’s governance structure should enable an upfront strategic steering, effective management and coordination, daily implementation of activities and ensure the use and uptake of the results. Importantly, the EU Member States, as public funders should have a leading role in the governance and strategic steering of the whole Partnership, including in the co-design and the strategic orientations of the ‘in-house’ activities, such as consolidating the research & innovation ecosystem, clinical trial preparedness for the community, contribution to ERA, training activities etc.). Moreover, the management structure should allow the coordinated input of key stakeholders, including but not limited to the research and innovation community, patients and citizens, health and care professionals, formal and informal care organisations, and innovation owners.
To ensure coherence and complementarity of activities and leverage knowledge and investment possibilities, the Partnership is expected to establish relevant collaborations with other Horizon Europe partnerships (institutionalised and co-funded) and missions as set out in the working document on ‘Coherence and Synergies of candidate European Partnerships under Horizon Europe’ as well as to explore collaborations with other relevant activities at EU and international level. The proposal should also consider synergies with EU programmes, including but not limited to EU4Health, the Digital Europe Programme (DIGITAL), the European Social Fund Plus (ESF+), the European Regional Development Fund (ERDF), InvestEU, the Recovery and Resilience Facility (RRF) and the Technical Support Instrument (TSI).
Cooperation with international organisations, and non-European institutions and experts may be considered. Participation of third countries is encouraged. Their commitments to the Partnership would not be eligible for the calculation of EU funding. Applicants should describe in their proposal the methodology for their collaboration and the aims they want to achieve with this kind of collaboration.
Proposals should pool the necessary financial resources from the participating national (or regional) research programmes with a view to implementing joint calls for transnational proposals resulting in grants to third parties. Financial support provided by the participants to third parties is one of the activities of this action in order to be able to achieve its objectives.
Collaboration with the EU agency involved in authorising orphan medicinal products, the European Medicines Agency (EMA), should be considered to enhance the sharing of knowledge and data regarding orphan medicinal products and rare diseases, while national agencies producing knowledge on orphan medicinal products and rare diseases may also join the Partnership, e.g. as beneficiaries.
When defining calls for proposals, this Partnership needs to consider the effective contribution of social sciences and humanities (SSH) disciplines and the involvement of SSH experts, institutions as well as the inclusion of relevant SSH expertise, in order to produce meaningful and significant effects enhancing the societal impact of the related research activities.
Collaboration with the European Commission's Joint Research Centre (JRC) must be considered to materialise the sharing of (meta)data regarding registries for rare diseases, exchanging data for clinical studies and research based on a unified pseudonymisation tool provided by the European Platform on Rare Disease Registration (EU RD Platform) and related tools and services, as well as in other areas of mutual interest, such as training and capacity building.
The total indicative budget for the partnership is up to EUR 150 million and subject to the effective implementation of the commitments made by the members of the consortium. The Commission envisages to include new actions in its future work programmes to provide continued support to the partnership for the duration of Horizon Europe.
The expected duration of the partnership is seven to ten years.
|Expected effects and impacts|
|Regions / countries for funding||EU Member States, Overseas Countries and Territories (OCT)|
Moldova (Moldova), Albania (Shqipëria), Armenia (Հայաստան), Bosnia and Herzegovina (Bosna i Hercegovina / Босна и Херцеговина), Faeroes (Føroyar / Færøerne), Georgia (საქართველო), Island (Ísland), Israel (ישראל / إِسْرَائِيل), Kosovo (Kosova/Kosovë / Косово), Montenegro (Црна Гора), Morocco (المغرب), North Macedonia (Северна Македонија), Norway (Norge), Serbia (Srbija/Сpбија), Tunisia (تونس /Tūnis), Türkiye, Ukraine (Україна), United Kingdom
|eligible entities||EU Body, Education and training institution, International organization, Natural Person, Non-Profit Organisation (NPO) / Non-Governmental Organisation (NGO), Other, Private institution, incl. private company (private for profit), Public Body (national, regional and local; incl. EGTCs), Research Institution incl. University, Small and medium-sized enterprise (SME)|
To be eligible for funding, applicants must be established in one of the following countries:
Applications may be submitted by one or more legal entities, which may be established in a Member State, Associated Country or, in exceptional cases and if provided for in the specific call conditions, in another third country.
In recognition of the opening of the US National Institutes of Health’s programmes to European researchers, any legal entity established in the United States of America is eligible to receive Union funding. Because the US contribution will be considered for the calculation of the EU contribution to the partnership, the concerned consortium of research funders from eligible EU Members States and Associated Countries must expressly agree to this participation.
Any legal entity, regardless of its place of establishment, including legal entities from non-associated third countries or international organisations (including international European research organisations) is eligible to participate (whether it is eligible for funding or not), provided that the conditions laid down in the Horizon Europe Regulation have been met, along with any other conditions laid down in the specific call topic.
A ‘legal entity’ means any natural or legal person created and recognised as such under national law, EU law or international law, which has legal personality and which may, acting in its own name, exercise rights and be subject to obligations, or an entity without legal personality.
The Joint Research Centre (JRC) may participate as member of the consortium selected for funding.
Administration & Governance, Institutional Capacity & Cooperation,
Health, Social Services, Sports
|Relevance for EU Macro-Region||EUSAIR - EU Strategy for the Adriatic and Ionian Region, EUSALP - EU Strategy for the Alpine Space, EUSBSR - EU Strategy for the Baltic Sea Region, EUSDR - EU Strategy for the Danube Region|
|UN Sustainable Development Goals (UN-SDGs)|
All proposals must be submitted electronically via the Funders & Tenders Portal electronic submission system (accessible via the topic page in the Search Funding & Tenders section). Paper submissions are NOT possible.
Proposals must be complete and contain all parts and mandatory annexes and supporting documents, e.g. plan for the exploitation and dissemination of the results including communication activities, etc.
The application form will have two parts:
Annexes and supporting documents will be directly available in the submission system and must be uploaded as PDF files (or other formats allowed by the system).
The limit for a full application (Part B) is 70 pages.
Beneficiaries may provide financial support to third parties. The support to third parties can only be provided in the form of grants. Financial support provided by the participants to third parties is one of the primary activities of the action in order to be able to achieve its objectives. Given the type of action and its level of ambition, the maximum amount to be granted to each third party is € 10,000,000.00.
The award criteria are described in General Annex D. The following exceptions apply: The thresholds for each criterion will be 4 (Excellence), 4 (Impact) and 3 (Implementation). The cumulative threshold will be 12.
|Call documents|| HE-Work Programme 2023-2024, Cluster 1, Destination 4 (379kB)
|Contact||National Contact Points for Horizon Europe |
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