The HPS Network attended the national conference of the National Association for Albinism and Hypopigmentation (NOAH) in Pittsburgh in July. Donna Appell gave a presentation about Hermansky-Pudlak Syndrome, as well as helped out at a number of other sessions for parents. “It is important for everyone with albinism to know the facts about HPS, not just the people that have HPS,” says Appell, “It is the albinism community that is most likely to encounter people with HPS. They are in the best position to look out for each other and help possibly save lives.”
The HPS Network also sold Dare to be Rare merchandise at the NOAH event.