April 4th-6th 2025 in Uniondale, New York

Registration for our 2025 NY Conference now open!

Families affected by Hermansky-Pudlak Syndrome gather each year for a conference. The HPS Network Conference is a place for families, physicians and researchers with an interest in Hermansky-Pudlak Syndrome (HPS) from around the world to gather for fellowship, education and fun.

This year’s conference will be held at the Long Island Marriott in Uniondale, NY on April 4-6th.

To register for this year’s conference follow this link: Registration

To make a hotel reservation for the conference, follow this link: Marriott Reservations

A DRAFT Agenda for the conference is now available: 2025 Draft Agenda

An annual one day conference is also being held in Puerto Rico in 2025.  For more information on everything planned in Puerto Rico, please visit our Puerto Rico events page

What is HPS?

Hermansky-Pudlak Syndrome (HPS) is a genetic metabolic disorder, characterized by albinism, visual impairment, and a platelet dysfunction that results in prolonged bleeding.

Some people with HPS may develop other complications depending on the HPS gene involved; these include, inflammatory bowel disease, pulmonary fibrosis, and kidney disease.

Currently there are 11 known types of HPS. The future might also reveal other unidentified HPS gene types. HPS can range from mild with few symptoms to very severe and disabling. Since HPS is an autosomal recessive disorder, both parents must be carriers of the abnormal gene.

Hermansky-Pudlak syndrome, was discovered in Czechoslovakia in 1959, in two patients cared for by Dr. Hermansky and Dr. Pudlak. It has since been identified in many nationalities around the world—however it is very prevalent among people of Puerto Rican descent, due to a “Founders Effect” on that island.