EJPRD Policy Meeting | 12 – 13 January 2021

The objective of this meeting is to kick off the discussion on the future Rare Diseases Partnership under Horizon Europe (HE).

HE Partnerships can be considered as “joint ventures” co-created and co-financed by the involved countries/stakeholders and the European Commission. Their strategic ambition is driven by key societal challenges translated into the needs of stakeholders (patients, research community, healthcare providers, funders, etc.) and supported by dedicated collaborative actions implemented at EU, international, national and regional levels. Under Horizon Europe Partnerships are expected to establish formal and regular collaboration with other relevant research and innovation initiatives. This must be reflected in their governance models and joint actions.

Rare Diseases remain a primary topic and model of transnational collaboration with high added value. With the implementation of the European Reference Networks, creation of the European Join Programme on Rare Diseases and increased empowerment of patients, recent years opened new avenues for the construction of cohesive rare diseases ecosystem. At the same time, the acceleration of new technologies, use of big data, innovation beyond omics, AI, introduces new challenges and opportunities.

It is time to reflect on the current state-of-the-art and take a look forward – in 2024 and beyond to prepare the next steps and build together the near future of rare diseases community in Europe and beyond.

In that context, the meeting will be divided in 2 parts:

Day 1: will provide a comprehensive state of the art of existing or forthcoming initiatives and inquire about the progress expected by 2024 when the new Partnership on Rare Diseases should be implemented. Each session will bring not only information but also perspectives from different stakeholders.

Day 2: will start with the introduction of future vision through the foresight scenarios of Rare 2030 and will set up the premises of the discussions. The focus of day two will be to identify the key components (key founding elements) of the future rare diseases partnerships and complement them by identifying key missing elements (gaps). This will be done through interactive sessions with active participation of the audience and support of moderators and driving questions. The joint restitution session will set the basis for next steps in shaping of the Rare Diseases Partnership under Horizon Europe.

Registration is mandatory and open until 15 December 2020.

Agenda

EJPRD