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2019 Family Conference

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NNPDF Family Support & Medical Conference

Thursday, August 15 – 18, 2019

Hilton Minneapolis/St. Paul Airport Hotel
3800 American Boulevard East  |  Bloomington, MN 55425
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NNPDF Family Support & Medical Conference

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Important Dates and Deadlines

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CONFERENCE DATES:

Thursday, August 15 – Sunday, August 18, 2019
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EARLY BIRD REGISTRATION & PAYMENT DEADLINE:

Monday, June 27, 2019
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FINAL REGISTRATION & PAYMENT DEADLINE:

Tuesday, July 16, 2019
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HOTEL RESERVATION DEADLINE:

Wednesday, July 24, 2019
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Conference Registration
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PAYMENT OPTIONS

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CREDIT CARD:

Pay by credit card via your online registration
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CHECK BY MAIL:

Make checks payable to:  
NNPDF

Mail to:  NNPDF, PO Box 49, Fort Atkinson, WI 53538-0049

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EARLY BIRD REGISTRATION AND FEES DUE MONDAY, JUNE 27, 2019
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FINAL REGISTRATION AND FEES DUE TUESDAY, JULY 16, 2019

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Registrations will be processed upon receipt of payment
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YOUR REGISTRATION FEE INCLUDES:

Thursday evening dinner, Friday breakfast and lunch,

Saturday breakfast and lunch, and Saturday evening Gala Event
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Helping Hand Financial Stipend

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Helping Hand Financial Stipends are reserved for NNPDF U.S. registered families who are attending the NNPDF Family Conference and require financial assistance to be able to take part in this great event.

This year those attending for the first time will be able to apply for a stipend award up to $500.00 to offset costs to attend the Family Conference. Those that have attended the Family Conference in the past will be able to apply for a stipend award up to $350.00. If you would like to apply for a Helping Hand Stipend please email Chris at nnpdf@nnpdf.org with your application request.

Applications must be submitted before July 11th. You will be contacted by July 30th with regards to your award. Once the conference is completed, please return your receipts up to your award for travel, lodging and food to nnpdf@nnpdf.org

We encourage you to also seek support through your local community organizations, such as, local family support agencies, service groups or religious organizations.

If you are applying for a Helping Hand Stipend, please make your hotel reservations as soon as possible. Do not wait for notification of the stipend award, as the block may fill up and our special room rate will expire.

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Working Groups

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The National Niemann-Pick Disease Foundation, Inc. (NNPDF) is organizing Working Groups to take place on Thursday, August 15, 2019. This event will take place immediately prior to the start of our Family Support & Medical Conference at the Hilton Minneapolis/St Paul Hotel, in Bloomington, Minnesota from 10:00 am – 3:00 pm.

The Working Groups will provide each Industry partner with the opportunity to connect privately with a group of 6-10 Niemann-Pick Type C or ASMD patients and/or immediate family members for a 1 ½ hour session. The Working Groups are a way to provide a voice for communication between patients, caregivers and their families, and the pharmaceutical industry to provide guidance on the patient and family experience. Participation is by application only. Follow the link below for complete details.
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Hotel Reservations

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Hilton Minneapolis/St. Paul Airport Hotel
3800 American Boulevard East | Bloomington, MN 55425

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HOTEL RESERVATION DEADLINE: Wednesday, July 24, 2019

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RESERVATION OPTION 1:

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**  AUGUST 15 – 18 CONFERENCE ONLY DATES  **

Click the button/link below
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Special Family Conference Hotel Rate – $131 per night:
  The hotel room is $131.00 plus tax & fees per room, per night at the time you book. Total cost to attendees is $131.00 + 14.53% / $19.03 (tax & fees) = $150.03 per night.
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RESERVATION OPTION 2:

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**  AUGUST 11 – 21 EXTENDED DATES  **

CALL 1-800-HILTONS

Reference: Hilton Minneapolis/St. Paul and National Niemann-Pick Disease Foundation

Extended Hotel Dates:  Many times families extend their stay by coming in early or staying later to explore the area. If you choose to do this YOU MUST CALL 1-800-HILTONS, reference Hilton Minneapolis/St. Paul and National Niemann-Pick Disease Foundation to make your EXTENDED DATES reservation. Rooms are based on availability and rates are subject to change if block fills.

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The cost of each room includes the following:

  • Complimentary Wireless High Speed Internet in all guest rooms
  • Complimentary use of the Fitness Center
  • Indoor Pool & Whirlpools
  • Complimentary Refrigerator
  • Complimentary Parking

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Air Transportation

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Just 10 minutes from Hilton Minneapolis/St. Paul Hotel, the Minneapolis/St. Paul Airport (MSP) is within miles of downtown Minneapolis and downtown St. Paul. It is the largest and busiest airport in the six-state Upper Midwest region. The airport offers nonstop service to 28 destinations and convenient connections to cities worldwide. The airport serves 25 to 40 million passengers annually. Visit mspairport.com for information.


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Ground Transportation

from MSP Airport to the

Hilton Minneapolis/St. Paul Airport Hotel

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Upon arrival and collection of checked luggage, please phone the Hilton at 952-854-2100 to notify the dispatcher that you are ready to be picked up. The dispatcher will request your call-back number and verify whether you’re in Terminal 1 (Lindberg Terminal) or Terminal 2 (Humphrey Terminal). The shuttles will pick up every 30 minutes at approximately 5/10 and 35/40 after each hour between 4:00 am and 1:00 am. Please follow directional signage to the Ground Transportation Shuttle Area or inquire at an Information Desk. Wait times at Terminal 2 (Humphrey Terminal) may be a few minutes longer than Terminal 1 (Lindberg Terminal).

For a listing of car rental agencies at the MSP Airport see page 5 of the registration packet.


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Helping Hand Financial Stipend

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Helping Hand Financial Stipends are reserved for NNPDF U.S. registered families who are attending the NNPDF Family Conference and require financial assistance to be able to take part in this great event.

This year those attending for the first time will be able to apply for a stipend award up to $500.00 to offset costs to attend the Family Conference. Those that have attended the Family Conference in the past will be able to apply for a stipend award up to $350.00. To request an application for a Helping Hand Stipend please email Chris at nnpdf@nnpdf.org.

Applications must be submitted before July 11th. You will be notified of your award by July 30th. After the conference, please return your receipts for travel and lodging to nnpdf@nnpdf.org using the reimbursement form that is emailed to you. 

We encourage you to also seek support through your local community organizations, such as, local family support agencies, service groups or religious organizations.

If you are applying for a Helping Hand Stipend, please make your hotel reservations as soon as possible. Do not wait for notification of the stipend award, as the block may fill up and our special room rate will expire.

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Activity Zone

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Complimentary care and activities for children and young adults of all ages will be provided during conference sessions (with breaks for lunch). 

The volunteers staffing the Activity Zone are committed to ensuring that your children, both those with NPD and their siblings, in a safe and fun-filled environment. Adults with NPD are also welcome in the Activity Zone. The Activity Zone offers a variety of activities, games, crafts, videos, friendship and FUN. If your children or young adult enjoys a particular activity or game, please feel free to bring it along to share with their friends.

Any individual taking part in the Activity Zone room MUST be pre-registered and will be signed in and out by their OWN parent or guardian. Volunteer staff are not allowed to administer medications or give feedings.

Upon registration confirmation, the NNPDF Central Office will be in contact with you to complete the necessary registration information for those attending the Activity Zone.


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Bloomington Tourism Information

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To learn about the many exciting attractions the Bloomington
 area has to offer, check out the link below.
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Travel Tips

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The link below from the Transportation Security Administration (TSA) provides helpful information to guide you in planning your trip, particularly while traveling with family members with special needs. This information includes what you can carry onto your flight, traveling with prescription medications, oxygen, wheelchairs, etc.

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Are you trying to navigate the airport with a person who has special needs? Contact the Transportation Security Administration (TSA) at least 72 hours before your flight and request a Passenger Support Specialist. This person will meet you at the Airport Security Checkpoint and walk you through airport security in the least invasive way possible. To access a Passenger Support Specialist, contact TSA (855) 787-2227.

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Additional conference information will be released as it becomes available. Watch your e-mail, Family Conference web page, and social media for the latest updates.


04/18/2019 jjb
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