Hermansky-Pudlak Syndrome Network Inc

Come join us for the 18th Annual HPS Network Family Conference in New York. This year's theme is the Academy Awards. Come walk down the red carpet with us and celebrate being a STAR!

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 and CHS will also be presented by leading experts in the field.

Featured at this year's 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/CHS Community

Breakout groups

For adults with HPS, parents of children with HPS, spouses, partners, friends or other supporters of those with HPS and families affected by CHS

HPS 101

For the newbies or those that need a refresher, this session cov-ers the basics of life with HPS

Healthy Living

Learn tips and tricks for avoiding sickness and staying healthy

Women and HPS

Learn what women with HPS need to know about women’s health issues

What HPS/CHS’ers should know about Social Security, Medicaid and Medicare

Do you have questions about these federal programs? An ex-pert will provide an overview and be available to answer questions

Presentation in a Bag training

Learn how to use this tool to educate your doctors, their staff and your community about HPS. Be a member of our game show audience as we use “Presentation in a Bag” to bring our outreach to the next level.

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.

Fun in the Sun

Learn from a dermatologist specializing in albinism how to best protect and care for your skin, as well as pick the best sun screens.

Meet the Dentist

Get information and advice about working with your dentist from a dentist who specializes working with patients with bleeding disorders.

Kids Konference:

This is a chance for the kids to make friends and participate in meaningful activities such as bowling, swimming and RINGLING BROS. Barnum and Bailey Circus!!

Exhibit area

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

CHS basics and fellowship

Special sessions for families affected by Chediak-Higashi Syndrome (CHS)

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

Past conferences have featured the following professionals as our honored guests:

• Dr. William Gahl, Clinical Director of National Human Genome Research Institute
• Dr. B. Gochuico, Pulmonologist, National Human Genome Research Institute
• Dr. T. Markello, Genetics, National Human Genome Research Institute
• Dr. Melissa Meredith, National Human Genome Research Institute
• Dr. J. Markowitz, Schneider's Children's Hospital
• Dr. M. Padilla, Mount Sinai Medical Center
• Dr. Lisa Young, University of Cincinnati
• Dr. S Seward, Columbia University
• Dr. Camilo Torro, National Human Genome Research Institute

Registration

Onsite conference registration opens at 2:00 pm on Friday, March 18 but please register as soon as possible.

Fees

What do the fees include?

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

Exhibitor Oppurtunities

Reach more than 250 visually-impaired attendees and their families from around the country - all affected by HPS, a rare type of albinism.

Exhibitor Tables

Exhibit tables are available for $300 - that’s about $1.50 per potential lead! The HPS Network is a 501C3 non-profit. All funds will go to producing the conference. Your exhibit table will include a table and distribution of a flyer or other promotional handout in our conference registration packets (if submitted by deadline.) The fee does not include hotel or other expenses.

Can’t travel to New York?

No problem! For $100 we will include any promotional flyer or other promotional material in our registration packets.

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

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.

Lodging

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