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24th Annual HPS Conference

Oct 27, 2016

24th Annual HPS Conference

About this Event

When: Friday, March 10, 2017 – 4:00pm – Sunday, March 12, 2017 – 4:00pm

Where: 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

Come join us for the 24th Annual HPS Network Conference in New York.

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

A selection of 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 and those who have lost a loved one with HPS.

Don’t be shy! We like to say, Happy People Sing! (H.P.S.) So, come sing with us, or just watch. It will be quite a show!

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.

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.

Back by popular demand! Come dance with us. It doesn’t matter if you’re a Zumba pro, or if you’ve never done it before.

Kids Konference
This is a chance for the kids to make friends and participate in meaningful activities such as swimming and crafts! A field trip is also planned.

Exhibit area
Exhibit tables will offer products and services of interest to those with HPS

Annual Banquet
Be our guest at the HPS Ball.  Party all night, (or until 11pm)

Guest Speakers/Experts attending the science conference
Confirmed speakers include the following professionals:

  • William Gahl, Clinical Director of National Human Genome Research Institute
  • S. Seward, Columbia University
  • Melissa Merideth, OBGYN, National Institutes of Health
  • Lisa Young, Associate Professor of Pediatrics, Medicine, Cell Biology, Vanderbilt University School of Medicine
  • Louis Cohen, Gastroenterology fellow at Mount Sinai Hospital
  • Anish Sharda, Hematology, Beth Israel Deaconess Medical Center and Harvard Medical School
  • Bernadette Gochuico, Pulmonologist, National Human Genome Research Institute (NHGRI)
  • Christian Mueller, Geneticist, Principle Investigator and Associate Professor at the University of Massachusetts Medical School.
  • Michael Gitman, Associate Chair for Academic Affairs and Quality, North Shore-LIJ Department of Medicine and Assistant Professor of Medicine, Hofstra North Shore-LIJ School of Medicine.

Onsite conference registration opens at 2:00 pm on Friday, March 10 but please register as soon as possible.


   Through February 10, 2017 After February 10, 2017
Adults $100.00 $120.00
Children under 12 $55.00 $75.00
Family of Five or more $300.00 $350.00

What do the fees include?
Registration fees include all meals from Friday evening to Sunday lunch. They also include conference activity supplies and handouts.

Need help funding your trip to conference?
There are lots of ways to come up with the money to attend. Many families hold fundraisers. Some reach out to local civic organizations such as the Lions Club or the Optimist Club to help. Here is a sample letter you can use to reach out to civic organizations.

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. Accommodations 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 AirportLaGuardia International Airport, as well as Islip MacArthur Airport.  We use a transportation service. Fees are $75 round trip. 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.  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 $154.00 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