If you live within driving distance of Orlando, and you've ever wanted to know about Hermansky-Pudlak Syndrome, here's your chance. The HPS Network will be in Orlando along with several experts from the National Institutes of Health. HPS testing will be available onsite on a first-come, first-served basis. This is a unique chance for anyone in the albinism community to learn more about HPS and get tested if you like. Don't miss it!
Contact: Elsie Gonzalez, Regional Coordinator, HPS Network Inc. at 407.454.9891 or Debbie Perez at 407.855.3111. Donna Appell, President, HPS Network, (800-789-9477), Hilda Cardona, RN at 301.974.7108
Date: May 21, 2008
FOR IMMEDIATE RELEASE
The Hermansky-Pudlak Syndrome Network sponsors the First Annual Conference for people with HPS/Albinism in Central Florida.
Orlando, Florida – The Puerto-Rican Chamber of Commerce of Central Florida and the Florida Hospital Church are helping the Hermansky-Pudlak Syndrome Network to promote awareness about a rare genetic disorder called Hermansky-Pudlak syndrome (HPS). The syndrome which is relatively common, within the Puerto-Rican community, causes albinism, visual impairment, and a bleeding disorder. Some people with HPS may develop colitis or pulmonary fibrosis (scarring of the lungs).The lung disease is potentially fatal and people with HPS may not be aware they are affected.There are clinical trails available for the treatment of the lung disease at the National Institutes of Health (NIH). Researchers from the National Institutes of Health are teaming up with the HPS Network to promote awareness about HPS among health care professionals and the general public in the Central Florida area. People with albinism and health care professional are invited to the Network conference to learn more about HPS. Attendance is free of charge."It’s our hope that this event will help generate awareness of HPS in the Florida area so that affected families can get the help they need ," said Donna Appell, President of the HPS Network.The conference will be held on Thursday, June 26th. 2008 from 6:00 PM to 10:00 PMAt the Florida Hospital Seventh Day Adventist Church, 2800 North Orange Ave Orlando, and FL 32804.For more information please contact: Elsie Gonzalez, Regional Coordinator, HPS Network Inc. at 407.454.9891, Debbie Perez at 407.855.3111 or Hilda Cardona, RN at 301.974.7108