EVENT: A FORWARD-LOOKING AGENDA FOR RARE DISEASES – 20 NOVEMBER 2018, EUROPEAN PARLIAMENT

The European Idiopathic Pulmonary Fibrosis and Related Diseased Federation (EU-IPFF) and the Group of Socialists & Democrats in the European Parliament are please to invite you to their event “A forward-looking agenda for rare diseases: bringing Europe closer to its people”.

Where: Room ASP 3H1, European Parliament, Brussels

When: 11:00-13:00, Tuesday 20 November

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 With the mandate of the European Parliament and European Commission drawing to a close, the event will bring together stakeholders from across the health sector, as well as EU policymakers, to discuss what has been achieved on the topic of rare diseases in the past four years and what remains to be done and how to ensure improving the lives of patients with rare diseases remain a political priority for the new legislature. 

·         Annika Nowak, Member of the Cabinet of Commissioner for Health and Food Safety, Vytenis Andriukaitis, will speak about how the Commission can ensure that rare diseases remain a priority.

·         MEP Elena Gentile (Italy, S&D) will discuss the role of the European Parliament in keeping rare diseases at the top of the policy agenda.

·         Franz Schaefer, Chair of the ERNs Coordinators Group will talk about how to scale-up successful initiatives within the European Reference Networks. 

To highlight the importance of patient involvement and person-centric care, this event will also mark the launch of the EU-IPFF Benchmarking Report and Position Paper on the Journey of Patients living with Idiopathic Pulmonary Fibrosis and other forms of Pulmonary Fibrosis.

The full agenda is available here.


This event is kindly hosted by MEP Elena Gentile with the support of the European Idiopathic Pulmonary Fibrosis Federation – EU-IPFF.

To register please fill in the form here or contact EU-IPFF Secretariat at secretariat@eu-ipff.org

Places are limited and registrations are on a first-come first-served basis.