The Dutch Pulmonary Fibroses society was started in 2001 by patients for patients, relatives en other interested.
On this page we have some PDF-files related to our organisation:
- Click this Download link for more information about the Dutch Pulmonary Fibrosis Society 2010
- Click this Download link for other our Enlish poster
- Click this Download link for information about quality criteria - desires and requirments of patients
We designed a study intended to clearly map the needs of patients with a rare lung disease in terms of care. Download the English summary of this study from 2012.
For several years a
Pulmonary fibrosis causes a serious breathtaking situation. Lung transplantation might be the only option. Please realise what it means to offer someone a new chance saying after a transplant: "live!" Jenny Penders, the founder of the Dutch Pulmonary Fibroses organisation tells her own touching story fill-in-your-donor-codicil. Unfortunately Jenny died on 27th January 2014, at the age of 53.
On www.LifewithIPF.com you will find information on the disease, treatment as well as patient stories about IPF.