Hermansky-Pudlak Syndrome Network Inc

The HPS Network attended the annual meeting of the American Thoracic Society, May 15 – 19, in New Orleans. Karen Tillman, Ashley Appell, Heather Kirkwood and Donna Appell manned a booth on the floor of the exhibit hall and spoke to several hundred lung doctors and researchers about HPS. Donna Appell also attended the American Thoracic Society Public Advisory Roundtable.

The HPS team also participated in the Breathing Better sessions held the Saturday before the show. These sessions are open to all lung disease patients and featured a variety of topics from advocacy needs on Capitol Hill to how nutrition and fitness can improve quality of life.

Patients also had an opportunity to meet in small groups with experts on their various diseases. Although the HPS Network didn’t expect to see any HPS patients at the event, Dr. Gochuico joined the session and sat at a table with HPS signage to help brand HPS as a disease that is at the research table.

The HPS Network also attended a press conference highlighting the Year of the Lung Campaign.

Heather Kirkwood and Donna Appell attended a number of scientific sessions carefully taking notes on new directions in pulmonary fibrosis research. 

On the last day, the entire team attended a session held by the Food and Drug Administration (FDA) which addressed why Pirfenidone was not approved in May. Instead, the FDA has asked for another clinical trial. The session was very informative. Leadership of the HPS Network will use the lessons learned from this session to formulate future advocacy goals. Stay tuned as we will need your help!