Friday, July 20, 2012

Idiopathic Pulmonary Fibrosis WORLD WEEK 2012

Today, we are happy to present a special event dedicated to Idiopathic Pulmonary Fibrosis: this is Idiopathic Pulmonary Fibrosis World Week 2012, which will take place globally from 23 to 30 September 2012! You are welcome to participate actively! Join Idiopathic Pulmonary Fibrosis World Week 2012!
We dont have RARE diseases and we dont have RARE patients! We need more knowledge about this disease! And now we are spreading WORD! Join us!  

Idiopathic Pulmonary Fibrosis (IPF | Fibrosi Polmonare Idiopatica) is a disease characterized by progressive scarring, or fibrosis, of the lungs. It is a specific type of interstitial lung disease in which the small air sacs of the lung, known as “alveoli,” gradually become replaced by fibrotic (scar) tissue. The abnormal fibrosis and scar formation typically begins in the terminal areas of the pulmonary tree lining the air sacs where gas exchange occurs. Normally, this tissue is a thin layer consisting of a few, easily permeable cells. With IPF, progressive scarring causes the normally thin and pliable tissue to thicken and become stiff, making it more difficult for the lungs to expand, preventing oxygen from readily getting into the bloodstream.
There is a corresponding increase in respiratory symptoms with dyspnea, air hunger and a non-productive cough. Idiopathic, or of unknown cause, IPF is not thought to be related to any other disease or condition, such as cancer or asthma. IPF is a uniformly fatal disease, with an estimated median survival time of two to five years. There are currently no medicines approved by the U.S. Food and Drug Administration (FDA) or European Medicines Agency (EMA) for the treatment of patients with IPF.

There are no known causes for IPF. However, the disease is typically found in people between the ages of 40 and 80, and affects more men than women. Cigarette smoking may increase the risk of developing IPF. Some cases of IPF occur in patients who have family members with the disease, which suggests that genetic factors 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 IPF is still unknown.


Once considered a relatively rare disease, IPF is now recognized as the most common interstitial lung disease (interstitial refers to the tissue surrounding the alveoli).
An estimated 100,000 people are living with IPF in the United States, and more than 30,000 new cases are diagnosed annually.
The incidence of IPF is greater than that of ovarian cancer, similar to those of pancreatic cancer and of all leukemias combined, and nearly 30 times that of cystic fibrosis.
73% of patients with IPF are > 65 years of age.
The 5-year mortality rate for patients with IPF is 50% to 70%.


To create a teaser for the event, Rosalba Mele developed a poster and a banner that can be attached to emails or posted on associations` websites. The poster and banner allows for any
association using it to personalize with their own logo. The image used in the poster/banner is intended
to make people smile and soften their hearts: Two elderly people blowing soap-bubbles or balloons
who are happy because they have the breath to do so. This is intended to be a starting point to discuss
the disease and its symptoms.

All the graphics will be available for free to any association interested in participating in IPF World Week. 

info line: Rosalba Mele | AMA FUORI DAL BUIO |
+393477111044 | |

1 comment:

  1. If you lose hope, somehow you lose the vitality that keeps life moving, you lose that courage to be, that quality that helps you go on in spite of it all. And so today I still have a dream.

    The Trumpet of Conscience

    Martin Luther King, Jr.