According to the National Institutes for Health (NIH), PF affects over 200,000 Americans. PF is a condition in which the lung tissue becomes thickened, stiff, and scarred. The development of the scar tissue is known as fibrosis.
As lung tissue becomes scarred and thicker, it loses its ability to transfer oxygen into the bloodstream. As a result, the brain and other organs don’t get the oxygen they need. In some cases, doctors can determine the cause of the fibrosis, but in most cases, there is no known cause – a condition known as idiopathic pulmonary fibrosis (IPF)
Rare Disease Legislative Advocates is hosting In-District Lobby Days to facilitate meetings for rare disease advocates across the country with Members of Congress in their local offices during the 2018 summer in-district work period (July 31st through Sept. 4th). The registration for in-district lobby days is free, and open through July 4th. Meeting with your Representative and Senators throughout the year is critical to building key relationships. These meetings also provide an opportunity to discuss legislation that is meaningful to the rare disease community, and to highlight the importance of the Rare Disease Congressional Caucus. Make YOUR voice heard as you advocate on behalf of the rare disease community!
Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. The campaign targets primarily the general public and seeks to raise awareness among policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.
In a speech on the floor of the U.S. House of Representatives, Congressman Eric Paulsen (R-MN) recognizes PFA’s Paul Fogelberg for winning the Everylife Foundation’s Rare Disease RareVoice Abbey Award. As Rep. Paulsen states, “There is no known cure for pulmonary fibrosis, yet Paul is a fighter, a leader, and a great advocate who is doing all he can to find one.”
Effective advocacy changes lives.
PFAdvocates are committed to being the change we want to see. To that end, we have developed a number tools that you can use to help us advocate on behalf of PF patients everywhere.