In April 2016, a Written Declaration on IPF was launched with the support of 16 Members of the European Parliament (MEPs). The Declaration aims to promote better cooperation between EU Member States to address existing health inequalities and promote research activities to find its cause and a cure. It encourages the European Commission and EU Member States to work together to support timely access to treatment, to limit the delays in approval by national regulators of authorised medication, and to address the existing inequalities in access to lung transplantation.
You can find the full text of the Written Declaration here.
Throughout a three-months campaign – including face-to-face meetings with MEPs and their staff, social media activities and a campaign stand in Strasbourg during parliamentary plenary weeks – the Written Declaration was signed by 384 MEPs and consequently officially adopted by the European Parliament in September 2016 (*to be adopted, a Written Declaration needs to gather the signatures of at least 376 MEPs). Following its adoption, the Declaration was forwarded to the European Commission and the European Council for a response to its requests.
“We have worked hard on the Written Declaration and thank MEP Elena Gentile, who spearheaded the declaration with us. We are very grateful to all MEPs who signed the Written Declaration on IPF and listened to our personal testimonials. We hope to get positive feedback from the European Commission and European Council in order to provide hope for the diagnosed and newly diagnosed IPF patients in Europe” said Carlos Lines Millán, President of EU-IPFF.
Elena Gentile, an Italian MEP who has been supporting EU-IPFF’s cause for several years, acknowledged the importance of the Written Declaration. “Despite IPF being a rare disease, it is a disease that cannot be forgotten and patients, caregivers, healthcare professionals and politicians alike need to cooperate together to raise IPF’s profile. The Written Declaration is crucial to initiate a European wide discussion and it’s the stepping-stone of a productive political path for EU-IPFF.”