Hermansky-Pudlak Syndrome Network Inc

The HPS Network holds an annual weekend conference that brings together members of the HPS Network community, their friends, families, researchers, and healthcare professionals.  The conference serves to provide a forum for formal information exchange and brings together friends for fellowship.

This year the 16th annual Hermansky-Pudlak Syndrome Network Conference will be held from March 20th to March 22nd, 2009 and is located at the Long Island Marriott Hotel & Conference Center.

 Highlights of the conference will include:

• Updates on the latest research regarding Hermansky-Pudlak Syndrome from the world’s foremost experts on the disorder
• Updates about current clinical trials underway at the National Institutes of Health
• Social activities for those with Hermansky-Pudlak Syndrome as well as their families
• Educational seminars about basic first-aid and preventative health tips for those with Hermansky-Pudlak Syndrome
• Information about Hermansky-Pudlak Syndrome and the standard of care for women’s health concerns
• A hands-on session to learn about genetics and albinism
• The opportunity to meet with vendors and agencies serving those with low vision
• Tips on stress management

The National Organization for Albinism and Hypopigmentation (NOAH) New York Chapter will hold its meeting in conjunction with the HPS Conference on Saturday, March 21st and offer other sessions for those with albinism and their families.  Those wishing to attend the Saturday night dinner, however, must be registered with the HPS Network.

Onsite conference registration opens at 2:00 pm on Friday, March 20 and the conference ends by 5:00 pm Sunday.  Conference registration is $65 per person or $200 for families of four or more.  Registration includes meals from Friday evening to Sunday lunch.  Download the registration form or tenative conference schedule now!

Vendor tables are also available free to non-profits serving those with low vision, or for $300 to for-profit companies with services or products of interest to those with low vision or albinism.  (This includes two conference registrations).  Other sponsorship opportunities are available.  Contact the HPS Network for more information.

Childcare is available during all conference sessions.  Advanced registration is required for child care.

Transportation is made available to the conference site starting Friday from John F. Kennedy International Airport, LaGuardia International Airport, as well as Islip MacArthur Airport free of charge by the Network in most cases.  If you need transportation, please contact the Network in advance so that someone can be available to meet you when you arrive in the airport terminal.  Advanced registration is critical to ensure we have enough volunteers to provide transportation.  Last-minute transportation requests may not be accommodated.

To make lodging reservations, please contact the Marriott Hotel directly with the information given below and identify yourself as a guest participating in the conference to receive the conference room rate.  Double occupancy rooms are available for $150 per night.

To register in advance for the conference please contact the HPS Network via phone or e-mail for any questions.

Phone: 1-800-789-9HPS
Email: info@hpsnetwork.org