My rare journey: Well, let’s start with not having a lot of answers from physicians and being on an emotional roller-coaster. I was 11 weeks old when I got the diagnosis of Hermansky-Pudlak Syndrome from my ophthalmologist Dr. Hurdle. After a 28 day hospital...
Nancy Lee has been a board member of the HPS Network for many years. In 2011, she received a lung transplant. Watch the video from News 25 – April is National Donate Life Month An estimated 22 people die each day waiting on a life-saving organ transplant...
Candice and Crystal Sipe’s Story Identical twins Hema and Rama arrived in Phoenix, AZ. August 3rd, 1981 from Hyderabad India. They had just turned a year old August 1st. Hema weighed 12 pounds, Rama 13 pounds, very small for a one year old child. Since they were...
Heather Kirkwood’s Story Heather Kirkwood’s mother always suspected her children had a bleeding disorder. During their childhood Heather and her younger brother were tested four different times for suspected bleeding disorders, but every time the tests came back...
Tuesday, April 6th is HPS Awareness Day! Starting in 2019, the HPS Network designated April 6th as HPS Awareness Day. Why April 6th? That is the HPS Network’s birthday, as we were incorporated as a 501c3 on. April 6, 1995. What is HPS Awareness Day? It is our one...
