You’re Invited! ATS-PAR Patient-Family Forum

As a member of the American Thoracic Society Public Advisory Roundtable, the LGDA is pleased to invite you to participate in the Patient-and-Family Forum, Saturday, May 19, 2012, during the International Conference of the American Thoracic Society at the Marriott Marquis in San Francisco, CA.

For the first time lymphangiomatosis and Gorham’s disease will be featured at the Forum. During the morning session, “Meet the Expert,” Debra Boyer, MD, will meet with patients/families to discuss the latest in research, clinical trials, and clinical care of patients of all ages with lymphangiomatosis and Gorham’s disease. Dr. Boyer is an Assistant Professor of Pediatrics at Harvard Medical School and a member of the Children’s Hospital Boston Vascular Anomalies Center, which has perhaps the greatest experience with lymphangiomatosis and Gorham’s disease. A large portion of the LGDA patient community has received or is currently receiving treatment at CHB. We are grateful to Dr. Boyer for giving her time to meet with patients and families during this conference. The afternoon session will consist of a panel discussion with prominent pulmonologists on quality of life, lung transplant, and other issues affecting patients and families living with diseases that involve the lungs.

There is no charge for patients and their families to attend the Forum, but reservations are required. Valet parking is complimentary and lunch will be provided following the morning session, with refreshments for the afternoon session. If you would like to attend, please send an email with the names of those planning to attend to Channels@LGDAlliance.org no later than Thursday, May 3, 2012, so we can provide the organizers with our reservation information by the May 4 deadline.

In addition to the Patient-Family Forum, the LGDA will be hosting an information and display booth in the main exhibit hall, Booth #1440. The President of our Board of Directors, Jack Kelly, will be manning the booth May 20-22 from 10:00 a.m. until 4:00 p.m., sharing information about lymphangiomatosis and Gorham’s disease and the LGDA with conference attendees from all over the world–13,000 people from 95 countries attended last year’s Conference! Jack also will be attending the Patient-Family Forum on May 19 and is looking forward to meeting all of you who attend.

The ATS International Conference is one of the largest gatherings of pulmonary, critical care and sleep clinicians and researchers in the world. As a member of the ATS Public Advisory Roundtable, the LGDA is pleased to participate in this Conference each year in order to bring attention to lymphangiomatosis and Gorham’s disease. One of the most serious manifestations of lymphangiomatosis and Gorham’s disease is lung involvement and because of the LGDA’s membership in the ATS-PAR pulmonologists from around the world are learning about these diseases and how they effect the lungs.

We hope you will be able to join us this year for the Patient and Family Forum. We’ll see you there!