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Families affected by Hermansky-Pudlak Syndrome to gather for 25th Annual Conference

Jan 18, 2018

Oyster Bay, N.Y. The Hermansky-Pudlak Syndrome (HPS) Network will hold its 25th Annual Conference March 9 – 11, 2018 at the Long Island Marriott in Uniondale, N.Y. HPS is a type of albinism that involves low vision (usually legal blindness), a bleeding disorder, and in some cases, bowel disease very similar to Crohn’s disease. Depending on the gene involved, it may also cause pulmonary fibrosis or a scarring of the lungs. Although it occurs around the world in all ethnic groups, it’s most common among people of Puerto Rican ancestry.

The HPS Conference allows families affected by the syndrome to meet others as well as hear from the world’s leading experts on the syndrome. Sessions include both fun activities as well as serious topics on how to manage living with HPS. Some of the sessions include:

  • Pre-conference workshop for mothers of children with HPS.
  • HPS 101 – a overview of the basics of HPS for new families, or those that need a refresher.
  • GI Wish I Felt Better – a chance for those affected with the bowel disease of HPS to hear about new research and network with peers.
  • Managing the bleeding of HPS – a session presented by a hematologist familiar with HPS.
  • Stand Up and Be Heard – an overview of legislative issues of importance to the HPS community as well as tips on how to get involved and be an advocate.
  • Women’s Health – an overview of the unique medical issues experienced by women with HPS given by an OBGYN experienced in helping women with HPS.
  • Social Aspects of Raising a Child with Albinism
  • Information about preparing for lung transplantation
  • A Top Chef-style cooking contest
  • Zumba classes
  • Information about Orientation and Mobility

Sunday’s program focuses on current research about HPS and includes speakers such as:

  • William Gahl, Clinical Director of the National Human Genome Research Institute
  • Kostas Alysandratos, a fellow at Boston University’s Center for Regenerative Medicine, who will speak about stem cell research.
  • Lisa Young, an HPS researcher at Vanderbilt University, who will give an update on the growing number of HPS Centers as well as HPS research.
  • Samuel Seward, one of the only physicians with a clinical practice for those with HPS, who will speak about the HPS Standard of Care.

To register or to learn about conference scholarship opportunities, contact the HPS Network at: (516) 922-4022 or e-mail: info@hpsnetwork.org.


The HPS Network is a 501(c)3 organization serving families affected by Hermansky-Pudlak Syndrome or HPS.