20th Annual HPS Conference

About this Event

Friday, March 8, 2013 - 4:00pm - Sunday, March 10, 2013 - 3:00pm

Long Island Marriott Hotel & Conference Center
101 James Doolittle Boulevard
Uniondale, New York 11553 USA
Phone: 1-516-794-3800
Fax: 1-516-794-5936
Sales: 1-516-794-3800 ext. 6800
Toll-Free: 1-800-832-6255

Registration form

Come join us for the 20th Annual HPS Network Conference in New York. This year's theme is Dare to be Rare!

Sessions will be chock-full of useful information for all ages designed to help those living with HPS or CHS lead happy and productive lives. The latest research on HPS will also be presented by leading experts in the field.

Proposed sessions at this upcoming conference

Research updates
Find out about the latest discoveries as well as what’s on the horizon
Fellowship opportunities
There will be lots of opportunities to connect with others in the HPS Community
Breakout groups
For adults with HPS, parents of children with HPS, spouses, partners, friends or other supporters of those with HPS
HPS 101
For the newbies or those that need a refresher, this session covers the basics of life with HPS
Presentation in a Bag training
Learn how to use this tool to educate your doctors, their staff and your community about HPS.
Funding the Cure
Learn what others have done to help raise money (tag sales, bake sales, web based donations) - it doesn’t take a big bank account, only a willing heart and some imagination.
GI Meet Up
This is a chance for those with the gastrointestinal complications of HPS to meet together and trade tips and strategies for coping with GI problems. This is not a medical session. Instead, it’s a chance to learn who the other HPS’ers with bowel disease are, and learn how they cope every day.
     Learn how you might use aromatherapy to help maintain good      physical, emotional and spiritual health. 
Kids Konference:
This is a chance for the kids to make friends and participate in meaningful activities such as bowling, swimming and crafts!
Exhibit area
Exhibit tables will offer products and services of interest to those with HPS
Annual Banquet
Come join us and meet our local stars as we roll out the red carpet so you can party all night! (or until 11pm)

Guest Speakers

Invited speakers include the following professionals:

  • Dr. William Gahl, Clinical Director of National Human Genome Research Institute
  • Dr. S. Seward, Columbia University
  • Dr. Melissa Merideth, OBGYN, National Institutes of Health
  • Dr. Yang Zhou, Associate Research Scientist, Yale School of Medicine
  • Dr. Lisa Young, Associate Professor of Pediatrics, Medicine, Cell Biology, Vanderbilt University School of Medicine
  • Veronica Anderson, Registered Nurse and Certified Integrative Aromatherapist


Onsite conference registration opens at 2:00 pm on Friday, March 8 but please register as soon as possible.


   Through February 28, 2013 After February 28, 2013
Adults $70.00 $95.00
Children under 12 $35.00 $55.00
Family of Four $210.00  

What do the fees include?

Registration fees include all meals from Friday evening to Sunday lunch. 


Child Care

Child care assistance will be offered from 9:00AM-4:00PM on Saturday and Sunday. Please reserve space for your children in advance on the registration form. Understand that our child care providers are all volunteers and that each family is ultimately responsible for their own children. We will provide activities and plenty of supervision so that the children will have a wonderful and safe time. Acomidations will be available at the hotel for those who do not want to participate in field trips.


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.


A limited number of double occupancy rooms have been set aside for the HPS Network and are available for $139.00 plus tax, per room, per night. To make lodging reservations, please contact the Uniondale Marriott Hotel directly and identify yourself as a guest participating in the Hermansky-Pudlak Syndrome Network conference to receive the correct rate.

Reservations may be cancelled up to 6:00PM on day of arrival or one night room rate will be charged. Check-in time is 4:00PM; check-out by 12 noon. Attendees arriving before check-in time will be accommodated as rooms become available.

Long Island Marriott Hotel & Conference Center
101 James Doolittle Boulevard
Uniondale, New York 11553 USA
Phone: 1-516-794-3800
Fax: 1-516-794-5936
Sales: 1-516-794-3800 ext. 6800
Toll-Free: 1-800-832-6255