Hermansky-Pudlak Syndrome Network Inc

The HPS Network Puerto Rico is advocating for resolution 158 in the Puerto Rican House of Representatives. The resolution would ask the Puerto Rican government to study the special needs of people with albinism, especially Hermansky-Pudlak Syndrome. HPS is most common in Puerto Rico and, in addition to albinism, causes a bleeding disorder. Depending on the gene involved, it can also cause digestive problems much like Crohn’s disease and a scarring of the lungs. Those affected have unique needs.