Foundation and Community Initiatives Offer Opportunities for Improving Patient Advocacy, Education, and Awareness in September
CHICAGO, Aug. 16, 2013 /PRNewswire-USNewswire/ -- The Pulmonary Fibrosis Foundation (PFF) announced today that it has designated September 7 as the second annual Global Pulmonary Fibrosis Awareness Day, as part of a month of awareness activities. Awareness is critical for any disease, but it is even more important for a rare disease like pulmonary fibrosis (PF). As part of Global PF Awareness Day, the PFF has created www.globalPFawareness.org, planned a Global Pulmonary Fibrosis Awareness Day Patient Education Event and Webcast, and created new disease awareness materials. The PFF is committed to increasing awareness and is asking members of the PF community to join them on September 7, and throughout the month, to do what they can to raise awareness about pulmonary fibrosis. Every effort helps. Every mention of the disease is a step closer to someone getting a timely and accurate diagnosis, receiving essential support, being heard by legislators, and ultimately finding a cure. Together we will make a difference by letting the world know about pulmonary fibrosis.
Ways to Get Involved
The PFF is asking the worldwide PF community to help make pulmonary fibrosis part of the global vocabulary by:
- Educating themselves and others by participating in the PFF's Global Pulmonary Fibrosis Awareness Day Patient Education Event by attending the event in person or watching the webcast
- Getting the conversation started by creating a grassroots awareness campaign
- Encouraging participation by hosting a Global Pulmonary Fibrosis Awareness Event on September 7, or another day this September, and inviting family and friends
Now is the time to let the world know about pulmonary fibrosis. If every dedicated member of the PF community tells someone about this devastating disease, there is potential to spread disease awareness to every part of the world.
Increasing general awareness can:
- Increase funding for research
- Encourage more research and drug development
- Facilitate enrollment in clinical trials
- Lead to a more timely and accurate diagnosis
- Improve the quality of patient care
- Influence lawmakers to pass legislation important to individuals
with pulmonary fibrosis and other rare diseases
- Encourage the FDA and other regulatory agencies to consider the
patient's point of view
- Help people affected by the disease obtain the resources they need
- Lead to effective treatments, and ultimately a cure, for idiopathic
Let the world know about pulmonary fibrosis. Learn more at www.globalPFawareness.org.
The PFF created www.globalPFawareness.org to:
- Act as the information hub for PFF and PF community awareness activities
- Link to information about the Global Pulmonary Fibrosis Awareness Day Patient Education Event and Webcast
- Give PF community members ideas of how they can participate in Global PF Awareness Day
- Provide tools for PF community members to create their own grassroots awareness campaigns
- Offer downloadable educational materials, available in English, Dutch, French, German, Italian, Portuguese, and Spanish
- Encourage PF community members to share their stories, photos, etc.
Global Pulmonary Fibrosis Awareness Day Patient Education Event
The Global Pulmonary Fibrosis Awareness Day Patient Education Event and Webcast will take place on September 7 at the Renaissance Barcelona Fira Hotel, in Barcelona, Spain. The event will be held in Spanish and webcast live for those unable to attend in person. The webcasts will be available in English, Dutch, German, French, Spanish, and Portuguese and viewers will be able to participate in the Q&A session. Webinars will be available online and on DVD post-event. The PFF encourages Support Group Leaders to host a viewing of the webcast for Global PF Awareness Day.
Disease Awareness Materials
To complement the PFF's current patient education materials, the PFF will be debuting new disease awareness materials—including a PF brochure, poster, and physician notepad—in September. The materials are being developed to facilitate the patient-physician conversation at the time of diagnosis and will be distributed at professional conferences and to interstitial lung disease centers. All materials will be available in English, Dutch, French, German, Italian, Portuguese, and Spanish and accompany the PFF's Pulmonary Fibrosis Patient Information Guide, Support Group Leader Guide, and Support Group Handouts + Forms Packet that are also available. To request materials, please contact the PFF's Patient Services department at firstname.lastname@example.org or call 888.733.6741 or +1 312.587.9272 from outside of the US.
"Awareness is essential to the Pulmonary Fibrosis Foundation's mission and to making a difference to the PF community," says Daniel M. Rose, MD, CEO and Chairman of the Board at the PFF. "We ask people to do whatever they can to let the world know about pulmonary fibrosis to make the disease part of the global vocabulary."
The Foundation also supports IPF World Week, September 21–29, presented by the Italian association AMA Fuori dal Buio, and Pulmonary Fibrosis Week at the ATS, September 22–28, presented by the American Thoracic Society Public Advisory Roundtable, and other educational events. A list of activities can be found at www.globalPFawareness.org/calendar.html.
The Pulmonary Fibrosis Foundation thanks sponsors Boehringer Ingelheim and InterMune for their generous support of Global Pulmonary Fibrosis Awareness Day.
About the History of Global Pulmonary Fibrosis Awareness Day
In 2007, the United States Congress supported the designation of a "National Idiopathic Pulmonary Fibrosis Awareness Week" to take place each year in September. In 2012, as part of a full month of awareness activities, the Pulmonary Fibrosis Foundation (PFF) designated September 22 as Global Pulmonary Fibrosis Awareness Day. The PFF presented two "Living with Pulmonary Fibrosis" Patient Education Events that were webcast live. One event was presented in partnership with the University of Modena and Reggio Emilia and translated into French, German, Italian, and Spanish; the second event was presented in partnership with National Jewish Health in Denver, Colorado, and offered in English. To complement the educational events, translated copies of the PFF's Pulmonary Fibrosis Patient Information Guide, Support Group Leader Guide, and Support Group Handouts + Forms Packet were made available for the first time. The inaugural Global Pulmonary Fibrosis Awareness Day was made possible with support from platinum sponsor Boehringer Ingelheim, silver sponsor the Culliton-Metzger Family, and bronze sponsor InterMune. Visit www.globalPFawareness.org for the webinars and materials from 2012.
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, in La Jolla, California. For more information visit www.pulmonaryfibrosis.org or call 888.733.6741 or +1 312.587.9272 from outside of the US.
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 38,000 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 and limited therapeutic options available for individuals with mild-to-moderate IPF in the EU, Canada, and Asia.
Associate Vice President, Communications and Marketing
SOURCE The Pulmonary Fibrosis Foundation