European IPF Patient Organisations call for patients and their families to have consistent and fair rights to:
- Early and accurate diagnosis
- Equal access to care
- A holistic approach to standardise IPF management
- Comprehensive and high quality information about the condition
- Better access to palliative care and end-of-life care
Idiopathic Pulmonary Fibrosis is a chronic, progressive, unpredictable and ultimately fatal lung disease. Currently, between 80,000 and 111,000 (1) people are living with IPF in Europe. This fatal condition has been around for decades, yet there is no cure and only limited treatment available. IPF often develops rapidly and many patients are given a survival time of just two to five years. Each year around 35,000 people in Europe are newly diagnosed with IPF, with this number likely to increase in the future.
The European IPF Patient Charter calls for greater awareness of IPF and for better access to care in European countries. The Charter lays down recommendations that, if adopted, would ensure improvements in IPF patients’ quality of life, whilst supporting efforts to find a cure.
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Brussels, Belgium : The European Idiopathic Pulmonary Fibrosis; The 16 September 2017 Related Disorders Federation [...]