IPF World Week
Idiopathic Pulmonary Fibrosis (IPF) World Week centers on the stories of patients who need their voices to be heard for this fatal irreversible respiratory disease. Founded in 2012, patient associations across the world join together this week to drive action for greater awareness of IPF, to call for better access to care and to bring hope to those living with the condition.
IPF is a disease in which scarring and hardening of lung tissue stops the lungs from working properly. The cause is unknown, there is no known cure and diagnosis is a long difficult journey. Since only half survive beyond two to five years from diagnosis, IPF patients and their caretakers must also come to terms with difficult quality of life changes.
We endorse the patient driven IPF charter. The charter poses recommendations for decision makers to take action to improve IPF patients’ quality of life as well as to support development of long-term treatments and work towards a cure. Specifically it calls for an early and accurate diagnosis, equal access to care irrespective of age, standardization of disease management, availability of comprehensive and high quality information, and improved access to palliative and end of life care. It is time for IPF.