IPF World Week
The Idiopathic Pulmonary Fibrosis Week was created in 2012 as an initiative to inform people around the globe that Idiopathic Pulmonary Fibrosis (IPF) is a rare and poorly understood chronic and ultimately fatal lung disease. Each year, around 35,000 people in Europe are newly diagnosed with IPF, with this number likely to increase in the future.
Each year during one week, Idiopathic Pulmonary Fibrosis patient associations across the world join together to drive action for greater awareness of IPF, call for better access to care, and bring hope to those living with the condition.
The Mission. Building a strong global voice
IPF World Week unites IPF patient associations, the medical community, and industry to fight this rare disease and drives national and international action to:
- Creating a national and international network of people working to support patients with Idiopathic Pulmonary Fibrosis
- Developing a map of the Centers of Excellence in the diagnosis and treatment of IPF
- Raising awareness, inform, train, guide stakeholders towards this social emergency
- Offering support and tools to patients and their families to cope better with this disease
- Promoting a culture of “donation” in collaboration with the organ donors associations
- Promoting social awareness and sensitivity towards the dangers of smoking in collaboration with the Anti-Smoking Centers.
- Stimulating awareness on the voluntary sector, with particular reference to the needs of the rare disease patients
- Promoting the knowledge on the new frontiers of biology, medicine, social sciences, psychology, analysis, law, economics, communication, etc. regarding IPF
2016 IPF world Week
Sign the European
You can make a difference!
For the first time, IPF patient advocacy groups came together to develop a European IPF Charter in support of more standardised care and equal access to diagnosis, treatment and after care options for those with IPF in Europe. The Charter has been endorsed my medical experts who are actively involved in IPF management and we are currently approaching various stakeholders to secure additional endorsement.
The European IPF Charter calls upon European institutions and national governments to guarantee patients’ rights to early diagnosis, access to care including medication and lung transplantation, standardised management of IPF, high-quality information and improved access to palliative and end-of-life care.
The Charter lays down concrete recommendations that, if adopted, would ensure improvements in IPF patients’ quality of life, whilst supporting efforts to develop better long-term treatments and ultimately find a cure.
To make these recommendations a reality, we aim at gathering 35,000 signatures to represent the number of new cases diagnosed every year in Europe.