Hermansky-Pudlak Syndrome Network Inc

Oyster Bay, NY – The Hermansky-Pudlak Syndrome Network (HPS Network) is working with the Jewish Guild for the Blind to offer a conference call-style support group to Spanish speaking parents of children with Hermansky-Pudlak Syndrome or HPS. HPS is one of the most common genetic disorders among those of Puerto Rican heritage.

HPS is a rare form of albinism that, in addition to vision impairment or legal blindness, also causes a bleeding disorder that can vary from mild to life threatening. Some genetic mutations also cause digestive problems much like Crohn’s disease and pulmonary fibrosis, or a hardening of the lungs.

The conference calls will be toll free. To sign up, please contact Donna Appell at the HPS Network, (516) 922-4022 or e-mail: dappell@hpsnetwork.org.

The Jewish Guild for the Blind (The Guild), located at 15 West 65th Street, New York, NY 10023, is a not-for-profit, non-sectarian agency that serves persons of all ages who are visually impaired, blind and multidisabled. The Guild offers a broad range of programs that include: medical, vision, low vision, psychiatric and rehabilitative services, managed long-term care, residential services, day health programs, schools and educational training programs for independent living. In addition, SightCare, The Guild's vision care education and training program, addresses the special needs of thousands of people nationwide. Our mission is to assist people who are blind or visually impaired, and who may have additional disabilities, achieve lives of dignity and independence.

The Hermansky-Pudlak Syndrome Network was founded in 1992 and incorporated in 1995. The organization maintains a patient registry of nearly a thousand patients affected by the syndrome. It offers support and information to affected families as well as advocates for medical research to one day find a cure.