English information

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: 

Quality criteria

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. 

 

National registry

For several years a Biobank has been established in the center of expertise in Interstitial Lung Diseases at St. Antonius Hospital Nieuwegein, the Netherlands. In this biobank, data and blood samples are collected from patients with interstitial lung diseases (ILD).   Click this Download link  for more information.

 

Touching story

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. 

 

Patient website

On www.LifewithIPF.com you will find information on the disease, treatment as well as patient stories about IPF.