We are glad to announce that Elena Gentile (S&D, IT), Member of the European Parliament, has been awarded with the EURORDIS policy maker award this year for supporting the cause of patients living with rare diseases and Idiopathic Pulmonary Fibrosis (IPF).
In 2014, she gave voice to Idiopathic Pulmonary Fibrosis (IPF) Patient Groups by supporting the first European IPF Patient Charter in the European Parliament. Two years later, she authored and mobilised Members of the European Parliament around a Written Declaration on IPF in 2016, which successfully passed with majority of the Members of the European Parliament (388 Members). The Written Declaration urged the Commission and the Council to promote research into IPF to help find its cause and cure; to collaborate with Member States as to enable access to EMA approved orphan drugs for IPF patients; and to ensure equal access to non-pharmacological treatments, including lung transplants, for patients across the Union. Thanks to her support, the Italian IPF Member Organisation (AMA Fuori Dal Buio) managed to organise a hearing in the Italian Senate, which triggered the inclusion of IPF into the National Health Basket in 2016, allowing all Italian IPF patients to access treatment across the country.
In 2017 she has endorsed EU-IPFF’s awareness campaign “Listen for the Sounds of IPF” and hosted a Parliamentary roundtable to bring to the attention of European policy stakeholders the recommended actions to improve early diagnosis of rare diseases and better connect primary care providers and recognised centres of excellence across Europe.
Being a trained doctor herself, she understands how difficult it can be to correctly diagnose and manage complex conditions – especially rare diseases – and recognises the need for political support to ensure that resources and expertise are pooled to ensure that the best care is provided and made accessible to all patients regardless of their origin and income. To show her commitment and dedication to the improvement of rare disease policy, she is also supporting the Parliamentary advocates for rare diseases, which was officially launched in October 2017.
MEP Gentile has given voice to the IPF community and has broken the silence that has isolated for years patients with this chronic, progressive, irreversible and fatal disease. Her dedication and commitment to put IPF on the European Agenda has and continues to give hope to IPF patients and their families, who are fighting to find the cause of the disease and a cure.
More information on the EURORDIS Black Pearl Award is available here.
“We can make Idiopathic Pulmonary Fibrosis an example of good practice that can be used as a model and replicated for other rare diseases, showing how institutions can work together to meet the needs of citizens.”
- Elena Gentile, Member of the European Parliament