A comprehensive medical paper on the care of patients with Hermansky-Pudlak Syndrome throughout life was published in the July, 2013 issue of Pediatrics, the journal of the American Academy of Pediatrics. The paper was authored by Dr. Samuel Seward, Assistant Vice President and Medical Director at Columbia University and Dr. William Gahl, Clinical Director for the National Human Genome Research Institute at the National Institutes of Health.
The paper explains HPS and outlines the health care needs of those affected by HPS from early childhood to adulthood. It will be a useful reference paper for doctors new to HPS. If you would like a copy to share with your physician, contact the HPS Network at: 1 (800) 789-9HPS or e-mail: firstname.lastname@example.org.