Members of the Hermansky-Pudlak Syndrome Network participated in the patient event day, organized by the Public Advisory Roundtable of the American Thoracic Society, in May. The event was held in conjunction with the ATS International Conference in Philadelphia.
The day was kicked off with an expert roundtable. Dr. Bernadette Gochuico, a pulmonologist from the National Institutes of Health, was on hand to answer questions from HPSers and their families.
“We were so excited that several HPS families attended the event,” said Donna Appell, President of the HPS Network, “We definitely had a presence at this year’s Meet the Expert Event. It’s great for the lung community to see people with HPS and their families.”
After lunch the HPS gang, all wearing their Dare to be Rare t-shirts, took up the front rows at the Breathing Better seminar. The seminar featured a variety of speakers presenting on topics of interest to all patients with lung disease.
Dr. Gail Weinmann from the National Heart, Lung and Blood read more: https://www.hpsnetwork.org/en/news/2013-05-28/hpsers-participate-in-american-thoracic-society-patient-event