Hermansky-Pudlak Syndrome Network Inc

The 17th annual HPS Network New York conference will be held March 19-21, 2010 at the Uniondale Marriott Hotel on Long Island in New York. This year conference attendees will be encouraged to believe in their dreams. 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.

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 and spouses, partners, friends or other supporters of those with HPS

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

The Young and the Breathless

How does HPS affect your love life? Liv-ing with a chronic illness can impact marriages and romantic relationships. Learn tips to cope. (This session is for adults only.)

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

Scrapbooking workshop

Learn more about the hobby of making scrapbooks. (See registration form and bring several pictures)

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.

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

It’s all about dreaming big for the future during our Slumber Party; without the slumber!! (Over at 11pm!) Kids and the young at heart can bring their teddy bears and wear FAMILY FRIENDLY PJs!

Registration

Onsite conference registration opens at 2:00 pm on Friday, March 20 but please register as soon as possible.

Fees

What do the fees include?

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

How do I register?

Download the registration form or contact the HPS Network directly by Email or phone.

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.

Want to know more?

Check out the rest by downloading our prtinable exhibitor Information pack and registration form!

Conference Schedule

Download a printable version of the tenative schedule.

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 $135.00 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