Susan, from our ILD Support Group, emailed the below to our members yesterday. It is short report on the PFF conference earlier this month.
PFF Summit 2013: An Environment to Improve Education, Facilitate Research, and Increase Disease Awareness
CHICAGO, December 17, 2013 /PRNewswire/ -- The Pulmonary Fibrosis Foundation (PFF) presented its second biennial healthcare conference, PFF Summit 2013: From Bench to Bedside, in La Jolla, California, from December 5-7, 2013. The innovative conference brought together medical professionals, patients, and caregivers for a three-day meeting. Over 520 people, including individuals from 16 countries, attended the PFF Summit 2013. Gregory P. Cosgrove, MD, Summit Co-Chair and PFF Medical Advisory Board Member, commented on the importance of the conference: “Once again the Pulmonary Fibrosis Foundation brought together all facets of the pulmonary fibrosis community to collaborate, educate, and inspire; it was a truly remarkable meeting.”
An outstanding international faculty presented lectures, participated in panel discussions, and conducted question and answer sessions. “I am thankful to all of the Summit faculty who contributed to making the PFF Summit 2013 a success. They helped create thought-provoking and educational dialogues that we need in order to develop better therapies,” remarked Patricia J. Sime, MD, Summit Co-Chair and PFF Medical Advisory Board Member.
The PFF partnered with National Jewish Health to provide this unique continuing medical education (CME) program. Scientific sessions included presentations on lung injury and repair, genetics and biomarkers, and drug development. Some of the topics discussed during the clinical sessions were: difficulties in making a confident diagnosis, what are the available treatment options, how to treat co-morbidities, and effectively communicating with patients and caregivers. The session concluded with an update on global perspectives and ongoing clinical trials.
Concurrently a program took place for patients, family members, and caregivers to address their educational needs as well a discussion on how to live better with pulmonary fibrosis. All sessions will soon be available as webinars on the Foundation’s website at www.pffsummit.org.
“PFF Summit 2013 brings value to all members of the PF community – as an educational resource, as a catalyst for change, and as a symbol of hope, “said Martin Kolb, MD, PhD, Summit Co-Chair. “It was a great opportunity to help plan this type of a meeting where healthcare professional, researchers, and patients attended. It was extraordinary to see it in action."
The Summit “kicked-off” with a Welcome Reception and Poster Presentations on Thursday evening, December 5. Posters were submitted from both academic institutions and the pharmaceutical industry. There was much new research contained in the posters. All who attended the reception were quite impressed with the originality and quality of the posters. The first place poster award went to Andrew Bryant, MD, of Vanderbilt University, for his presentation on “Endothelial Specific Inhibition of Hypoxia-Inducible Factor Blocks Development of Pulmonary Hypertension Associated With Lung Fibrosis.” The top poster awardees were able to present their research during the Saturday morning session.
The keynote address, “Cystic Fibrosis Therapeutic Development: A Game Changer,” was given by Robert Beall, PhD, President and CEO of the Cystic Fibrosis Foundation. Dr. Beall discussed some of the drug innovations that have dramatically improved the lives of individuals with cystic fibrosis. Friday also featured a special luncheon presentation by John F. Crowley, Chairman and CEO of Amicus Therapeutics, titled “When Advocacy Research is Personal: The Importance of Advocacy in Drug Development and Innovation.” His experience with his children’s diagnosis of Pompe disease, and his unrelenting pursuit to help them, profoundly inspired the audience.
All attendees were invited to a Networking Dinner on Friday, December 6. The evening’s highlight was an announcement from Daniel M. Rose, MD, the PFF’s CEO and Chairman of the Board, that the Foundation will commence the PFF Care Center Network and PFF Patient Registry. This initiative should improve the health and quality of life of patients with pulmonary fibrosis. In addition, it will help provide critical insights that will enable the research community to develop more effective therapies. “To make progress with this disease, we need a multidisciplinary approach by teams of expert medical professionals, we need more data, and we need to track the natural history of the disease,” said Dr. Rose. “The Care Center Network and Patient Registry will provide the framework for improved patient care and progress towards a cure.”
The Networking Dinner also featured speeches by representatives from the Summit’s two lead sponsors InterMune and Boehringer Ingelheim. The program closed with the PFF’s Patti Tuomey, EdD, President and Chief Operating Officer, leading a toast thanking the faculty, sponsors, participants, and PF community for their dedication and support.
The Pulmonary Fibrosis Foundation would like to thank the following sponsors for their generous support; Everest Sponsors: InterMune and Boehringer Ingelheim; Shasta Sponsor: Genentech; Grand Teton Sponsors: Biogen/Idec, Stromedix, PatientsLikeMe, and Inspire; and Friends of the PFF Sponsors: Mike and Donna Henderson, ImmuneWorks, and the Phyllis Dirks Demont Trust.
PFF Summit 2015: From Bench to Bedside will be held November 12-14, 2015. Information about PFF Summit 2015 will soon be available at www.pffsummit.org.
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