Susan from our ILD Support Group sent this information below regarding Global Pulmonary Fibrosis Awareness Day and Webcast information. Thanks, Susan!
PULMONARY FIBROSIS FOUNDATION ANNOUNCES INTERNATIONAL PATIENT SUPPORT GROUP INITIATIVE AND GLOBAL PULMONARY FIBROSIS AWARENESS DAY
Foundation and Community Initiatives Offer Opportunities for Improving Patient Advocacy, Education, and Awareness in September
CHICAGO, August 31, 2012 /PRNewswire/ -- The Pulmonary Fibrosis Foundation (PFF) announced today that it is expanding its patient support group network to include the international pulmonary fibrosis (PF) community. The Foundation has partnered with Luca Richeldi, MD, Director and Founder of the Center for Rare Lung Diseases at the University of Modena and Reggio Emilia, to organize a Support Group Leader Workshop on September 29. The goal of the workshop is to assist in the development of a support group network in the European Union (EU). "It is our shared belief that support groups make a significant contribution to improving total patient care and quality of life," stated Daniel M. Rose, MD, President and Chief Executive Officer. "The workshop will be a forum to assess appropriate methods for building a viable support group network in the EU."
Representatives from over 90 EU interstitial lung disease centers (ILD) and 12 patient advocacy groups are invited to attend this important event. The agenda for the workshop will include presentations and discussions on support group guidance, best practice models, and relevant cultural and geographic issues in a support group environment. The PFF will provide translated copies (French, German, Italian, Spanish, and Portuguese) of its Support Group Leader Guide to the EU audience. The workshop will take place in Modena, Italy, just prior to the start of the prestigiousInternational Colloquium on Lung and Airway Fibrosis (ICLAF) conference. Dr. Daniel M. Rose, President and CEO of the Foundation, will also give a presentation on "The New Paradigm of Patient Advocacy Organizations" at the conference. Learn more and register to attend at www.pulmonaryfibrosis.org/leaderworkshop.
As part of the first Global Pulmonary Fibrosis Awareness Day, the Foundation will "kick-off" its European support group initiative with a live informational webcast, "Living with Pulmonary Fibrosis," on September22. Webcasts will take place in Modena, Italy, at the University of Modena and Reggio Emilia and in Denver, Colorado, at National Jewish Health. In addition to the broadcast locations in Modena and Denver, individuals will be able to view the webcasts at ILD centers in Europe and the United States. Patients, caregivers, and family members will be able to come together to view the presentation in a supportive environment at a convenient location. A health care professional will be present at these sites to answer any questions viewers may have.
The session in Modena will begin at 3:30 p.m. (CEST); it will be presented in English with simultaneous live French, German, Italian, and Spanish translations. The Denver session will begin at 10:00 a.m. (MDT). Additionally, the Foundation will have translated copies of the Pulmonary Fibrosis Patient Information Guide available to download, print, and distribute. Both webcasts will be recorded and available on demand at www.pulmonaryfibrosis.org.
The Foundation invites the worldwide PF community to participate in Global Pulmonary Fibrosis Awareness Day and its other upcoming activities. "The months of September and October offer a variety of activities for our patients, caregivers, and family members to learn, fundraise, and increase awareness," said Patti Tuomey, the PFF's Chief Operating Officer. "Chase Community Giving, the Hike for Lung Health, and our Breathe Benefit 2012 offer a variety of ways to get involved and make a difference." Learn more atwww.pulmonaryfibrosis.org/awareness2012.
The Foundation also supports the awareness initiative, IPF World Week, September 23-30, presented by the Italian association AMA Fuori dal Buio in collaboration with the Center for Rare Lung Diseases at the University of Modena and Reggio Emilia. A list of September and October activities can be found at www.pulmonaryfibrosis.org/awareness2012/eventscalendar.
The Support Group Leader Workshop and Global Pulmonary Fibrosis Awareness Day are fully funded by platinum sponsor Boehringer Ingelheim and bronze sponsor InterMune.
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About the Pulmonary Fibrosis Foundation
The mission of the Pulmonary Fibrosis Foundation (PFF) is to help find a cure for idiopathic pulmonary fibrosis (IPF), advocate for the pulmonary fibrosis community, promote disease awareness, and provide a compassionate environment for patients and their families. The PFF collaborates with physicians, organizations, patients, and caregivers worldwide. December 1-3, 2011 the PFF hosted its first biennial international scientific conference, IPF Summit 2011: From Bench to Bedside, in Chicago; PFF Summit 2013 will be held December 5-7, 2013. For more information visit www.pulmonaryfibrosis.org or call 888.733.6741.
About Idiopathic Pulmonary Fibrosis
Idiopathic pulmonary fibrosis (IPF) is a condition in which over a period of time the lung tissue becomes thickened, stiff, and scarred. The development of the scar tissue is called fibrosis. As the lung tissue becomes scarred and thicker, the lungs lose their ability to transfer oxygen into the bloodstream. As a result, the brain and other organs don't receive the oxygen they need. In some cases, doctors can determine the cause of the fibrosis, but in most cases, there is not a known cause. When there is no known etiology for the fibrosis (and certain pathologic or radiographic criteria are met), the disease is called idiopathic pulmonary fibrosis, or IPF. IPF affects approximately 200,000 individuals in the United States (US), and 138,000 individuals in the European Union (EU). The annual mortality is estimated to be 40,000 in the US alone, with an average survival of 2-3 years following diagnosis. There is no cure for IPF. There is no FDA-approved treatment for IPF in the US; limited therapeutic options are available for a subset of individuals with IPF in the EU and Asia.
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Contact:
Dolly Kervitsky, RCP, CCRC
Vice President, Patient Relations
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888.733.6741
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