Endorsed by a coalition of 11 idiopathic pulmonary fibrosis (IPF) patient organisations, the European IPF Charter is an initiative to raise awareness of this fatal condition and promote better access to care for patients in Europe. The Charter was developed in close cooperation with medical experts and will be launched at the European Parliament in Brussels on 30 September 2014. MEPs Andrey Kovatchev and Cécile Kyenge will be hosting the event.
Representatives of the British and Austrian patient organisations will introduce the Charter and present their insights on the challenges of living with IPF. The launch of the Charter takes place during the third edition of IPF World Week, an annual global awareness raising campaign established in 2012.
Idiopathic Pulmonary Fibrosis is a progressive and irreversible chronic lung disease. In those affected, the normally thin and pliable tissue of the lungs becomes increasingly thick and prevents oxygen from moving into the bloodstream, thereby leading to a continuous decline in lung function. Initial symptoms include shortness of breath and chronic cough, which eventually develop into respiratory failure or other related conditions such as pulmonary hypertension, pulmonary embolism, pneumonia, heart failure and lung cancer.
In Europe, there are currently between 80,000 and 110,000 people living with IPF and an approximate 35,000 people are newly diagnosed every year. These numbers do, however, not reflect the full magnitude of the disease, as IPF is often difficult to diagnose with initial symptoms resembling those of other common diseases. The condition is fatal and many patients are facing a survival time of only two to five years. Limited treatment options are available only and so far no cure for IPF exists.
With the launch of the Charter, IPF patient organisations are calling for consistent and equal access to care and treatment, including early and accurate diagnosis, better access to palliative care and end-of-life care as well as a holistic approach to standardise IPF management. In addition, the Charter calls for greater awareness and the provision of comprehensive and high quality information about the rare condition. The initiative aims to collect 35,000 signatures in representation of the number of new cases diagnosed every year in Europe. The first European IPF Patient Charter and IPF World Week are funded through a grant from InterMune International AG.
By signing the EU IPF Charter, you can add your voice to our call for undertaking concrete and implementable actions that could transform IPF into a no longer fatal disease and improve the quality of life of thousands of patients living with IPF.