The activities of the Member States form the basis for most European initiatives, and national activities are driven by the ideas of local or regional stakeholders. Therefore, a bottom-up approach often leads the way. Hessen, one of the leading federal states in Germany, was the first state to put rare disease (RD) and undiagnosed (UD) centers on its political agenda. The regional support association (FUSE Hessen e.V.; members of ERN-LUNG are involved here) was pleased to be able to present the topic to politicians from all parties as part of an “Evening with Parliament” – an excellent opportunity to raise awareness to the unmet needs of RD and UD patients. The press release can be found here (in German).
