Putting early diagnosis of rare diseases on top of the European agenda: one year after the Written Declaration on idiopathic pulmonary fibrosis

In follow up to the Written Declaration on IPFEU-IPFF in collaboration with MEP Elena Gentile and MEP Renate Sommer organised an event at the European Parliament on 26 September entitled ‘Putting early Diagnosis of Rare Diseases on Top of The European Agenda: One Year after the Written Declaration on idiopathic pulmonary fibrosis. 

The meeting provided a platform for a call to action on early diagnosis of rare diseases with IPF serving as a leading example for putting rare diseases on the European political agenda. To this aim, the parliamentary event brought together relevant stakeholders in the IPF/ rare diseases field, including healthcare professionals, rare diseases organisations and international advocacy groups. Furthermore, the meeting provided an opportunity to present to policy-makers the IPF international campaign Listen for the Sounds of IPF, which was launched during the IPF World Week 2017. 

This event was held under the patronage of the European Parliament. 

The agenda is available here. The event's report is available here. A selection of pictures can be found here

 

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