On 11 April 2016, 16 Members of the European Parliament from 9 EU Member States presented a written declaration 26/2016 on idiopathic pulmonary fibrosis during a plenary session of the European Parliament.
The Written Declaration is open for signature until 11 July 2016 and your support, in the form of a signature for this declaration, can make a significant contribution in reaching its adoption. The Written Declaration focuses its recommendations on critical issues for all IPF patients across Europe, namely:
- Investment in research to find the cause(s) of IPF and a cure
- Timely access to treatments, especially once they have received approval by the European Medicines Agency
- Equality for patient in their access to lung transplantation and non-pharmacological treatment
- Better education and recognition of the role of healthcare professionals in IPF care
This Written Declaration, if adopted, is a unique opportunity to put pressure on the Commission and EU Member States to engage more actively in enhancing the lives of IPF patients and their families.
Approximately 80,000 to 111,000 in Europe have IPF, a rare, chronic, irreversible and ultimately fatal disease characterized by progressive loss of the ability of the lungs to absorb oxygen due to scarring.
The cause is unknown and there is no cure. IPF is more frequently diagnosed in the 50+ age group.
Once diagnosed, a patient does not have more than 2 to 5 years to live. There are currently 35,000 new IPF cases every year and the disease is too often unknown and misdiagnosed.