Hermansky-Pudlak Syndrome Network Inc

For the first time, the HPS Network attended Digestive Disease Week in June, a large international meeting of four medical societies representing physicians who work in the field of digestive health.

 Donna Appell, Ashley Appell and Heather Kirkwood manned a booth on the trade show floor to begin to generate greater awareness of Hermansky-Pudlak Syndrome among this group of physicians.

 Few were aware of the syndrome, and indeed HPS was not mentioned in any abstracts, posters or sessions during the event. The Network has much work to do to generate awareness about the digestive complications of HPS.

 The team did, however, meet a researcher currently working on a mouse model for the digestive complications of HPS. This was promising news.

 While in Chicago for the event, the group was joined by Janet Perez and gave a presentation on HPS at St. Mary’s hospital in Humbolt Park.