On 30 September 2014, 11 European IPF Patient Organisations came together in the European Parliament in Brussels to officially launch the first European IPF Patient Charter. The event was hosted by MEP Andrey Kovatchev (EPP, Bulgaria), who was joined by MEP Kashetu Kyenge (S&D, Italy), and MEP Dominique Riquet (ALDE, France).
At a round table, Mike Bray from the UK IPF Patient Organisation, presented the IPF Patients community. Günther Wanke from the Austrian IPF Patient Organisation told the participants about living with IPF from a patient’s perspective. Nathalie Chaze and Gerhard Steffes from the European Commission presented EU activity in the field of rare diseases. Ber Oomen, executive secretary of the European Specialist Nurses Organisation, outlined the role of specialist nurses in the treatment of patients with rare diseases. Lastly, Marlies Wijsenbeek, a pulmonologist at Erasmus MC, shed light on the difficulties medical professionals face when diagnosing and treating IPF.
The Patient Charter received big support from MEPs across the political spectrum, with 9 MEPs attending the event in person, signing the Charter and making statements in support of the initiative. In addition delegates of the European IPF Patient Organisations met with 22 MEPs from 8 countries, discussing IPF and rallying support for the Patient Charter.
The launch of the first European IPF Charter has successfully raised awareness for IPF and brought the topic on the agenda of the European Parliament. MEPs are eager to help beyond launching the Charter. Following a discussion with the Italian IPF Patient Organisation, MEP Nicola Caputo (S&D, Italy) immediately addressed a written parliamentary question to the European Commission, asking what specific measures the European Commission is going to take in order to address the concerns raised in the IPF Patient Charter, particularly with a view to increasing access to treatment. Furthermore, 11 MEPs have endorsed an open letter addressed to the Chief Medical Officers of the 28 Member States of the European Union urging them to consider the recommendations of the IPF Patient Charter when discussing the rare diseases framework at their meeting in Rome this week.
Now that the IPF Patient Charter has officially launched with tremendous support from European policy makers, what is left to achieve is reaching the goal of 35,000 signatories to the Charter – a symbolic number representing the number of patients diagnosed with IPF every year.