Building a stronger voice for IPF

IPF World Week

IPF WORLD WEEK 2016: from Saturday September 17th to Sunday September 25th

MISSION:

  • 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.

    Read here the press release on the IPF World Week 2016

    Read more: IPF World Week

Idiopathic Pulmonary Fibrosis

What is Idiopathic Pulmonary Fibrosis?

“Idiopathic” means unknown – no one knows the exact cause of IPF. What is understood is that, with IPF, there is a change in the lung’s normal healing process that produces extra scar tissue. Unfortunately, there are no symptoms of this change until the scar tissue builds up in the lungs and affects breathing. The causes of this abnormal healing process are unknown, but there are a number of factors that may be associated with an increased risk of developing IPF.

Potential risk factors associated with IPF

Cigarette smoking may increase the risk of developing IPF. Some cases of IPF occur in patients who have family members with IPF, which suggests that genetics may contribute to the risk of developing IPF in certain individuals. Although these risk factors are associated with IPF, it is important to remember that they have not been shown to cause IPF − the cause of the disease is still unknown.

The incidence of IPF

The precise incidence and prevalence of IPF is difficult to determine, however it is a relatively rare disease. Based on several sources it is estimated that there will be approximately 30,000–35,000 new patients diagnosed with IPF in the 27 EU countries each year. More cases generally occur in men than in women and it is usually diagnosed in adults who are aged between 40 and 80 years old.

 

What are the symptoms of IPF?

– Early signs and symptoms typically include:

Read more: Idiopathic Pulmonary Fibrosis