Alignment of national rare diseases strategies with the European Joint Programme on Rare Diseases

The European Joint Programme on Rare Diseases (EJP RD) is based on a joint effort reflected by common initiatives (like for example funding opportunities or trainings) but also through implication of national contributions (for example to funding or infrastructures). Thus, the coordinated undertaking of creation of a RD research European ecosystem must be translated at both national (or even regional) and European (or even international) levels. Therefore, it is expected that the European dimension of the EJP RD should have impact on the activities of the EJP RD itself but also on the undertakings at national and EU level. To monitor and enhance this dimension, the EJP RD Work Package entitled “Integrative Research and Innovation Strategy” (WP2) developed different type of actions. One of the most important activities consists of collection of information from EU Member States (via a survey targeting key persons identified in each country) in relation to the development and implementation of the national plans or strategies on rare diseases.  

The objective of the survey is to identify relevant/complementary RD-related actions performed at national level, with specific focus put on EU-13 countries with respect to their specific needs, obstacles and advancements. 

The analysis of the survey allows on identification of points of national alignment with EJP RD, as well as specific gaps that require further actions (on EJP RD and/or national side). The outcomes and identified needs are transmitted to the National policy makers, so these can translate the identified gaps into actions.  

In this context, two “Strategic Workshops” with relevant policy stakeholders were planned since the inception of the EJP RD.  

The workshop will focus on three levels:
– Presentation of the current state of the art (EJP RD advancement and analysis of national RD actions)
– The zoom on country experience (best practices and challenges)
– The way forward
The information gathered through the survey will serve as basis to trigger the discussion and further enhance the alignment between national and EJP RD activities and promote a higher leverage of national capacity.

The target audience are policy makers and persons involved in national, EU, and international rare diseases strategies.

Registration is open HERE until July 3rd.

The agenda is available HERE.