Hermansky-Pudlak Syndrome Network Inc

Come join us for the 19th Annual HPS Network Family Conference in New York. This year's theme is "Count our lucky stars".

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 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

Healthy Living

Learn tips and tricks for avoiding sickness and staying healthy

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

Do you have questions about these federal programs? An expert 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.

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.

Planning for transition from high school to higher education

Get tips and advice from other HPS families about making the transition from high school to higher education, whether it be a vocational school, or a four-year college.

Seeking the first grown-up job

Learn what you need to know about entering the job market for the first time as someone with HPS. What are your legal rights? What, if anything, do you need to say about your health status?

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.

Healthcare Proxy (the enhanced healthcare proxy)

What is a healthcare proxy? What is the enhanced healthcare proxy? What do you need to think about as you plan for who should be involved in your medical decision making process?

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 (confirmed)
• Dr. T. Markello, Genetics, National Human Genome Research Institute (confirmed)
• Dr. S. Seward, Columbia University (confirmed)
• Dr. Perry Sheffield, Mount Sinai School of Medicine
• Dr. Yang Zhou, Yale University School of Medicine 

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 300 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 $1.25 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