Representatives of the Hermansky-Pudlak Syndrome (HPS) Network attended the conference of the National Association for Albinism and Hypopigmentation (NOAH), July 12 – 15 in St. Louis.
For the first time, information about HPS was shared in the plenary session at the conference. Donna Appell, president and founder of the HPS Network, gave the presentation and answered questions throughout the weekend.
“It was so great to have everyone in attendance hear about HPS,” says Nancy Lee, a board member of the HPS Network and long-time NOAH member.
In addition, a breakout session was held about HPS and the film “RARE” was screened for those in attendance.
Nancy Lee, a board member of the HPS Network, spoke on a panel titled “The Many Faces of Albinism.” The panel highlighted the diversity of the albinism community.
NOAH awarded the HPS Network the Founder’s Award for the Network’s service to the albinism community.
The HPS Network, and it’s attending members, also manned two tables in the exhibit area – one about HPS and the other selling Dare to be Rare t-shirts.