Event Calendar

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Just bookmark this page and check back often for the latest programs and events.

2019

WEBINAR - Legislative Advocacy - How to tell your story

Thursday, January 24, 2019
6:30 pm7:30 pm
Personal PC or Mobile device
WEBINAR - Legislative Advocacy - How to tell your story

Join us for a live interactive virtual program that offers you and your family members or caregivers the opportunity to:
• Deepen your understanding of Legislative Advocacy
• Learn how to tell your story
• Prepare for Legislative day Feb. 11th, 2019 or local visits in your district.
• Discover valuable resources, tools, and support
• Hear from a patient advocate about their personal experience with legislative advocacy
• Gain valuable information and support from others in the hemophilia community through the live Q&A session

Ohana vWD Education Dinner (Shire)- Hilo/Big Is. 1/31/19

Thursday, January 31, 2019
6:30 pm8:30 pm
Restaurant Miwa 1261 Kilauea Avenue (#230) Hilo, HI 96720

This HELLO TALK program provides an educational format to introduce the symptoms and types of von Willebrand disease, recognize potential treatment options, and learn how emotional and community support systems can help those living with this bleeding disorder.

Ohana vWD Education Dinner (Shire)-Honolulu 2/1/19

Friday, February 1, 2019
6:00 pm8:30 pm
TBA - Honolulu

This HELLO TALK program provides an educational format to introduce the symptoms and types of von Willebrand disease, recognize potential treatment options, and learn how emotional and community support systems can help those living with this bleeding disorder.

Ohana Education Dinner (Bayer) Honolulu 2/6/19

Wednesday, February 6, 2019
6:30 pm8:00 pm
Natsunoya Tea House

This will be an interactive session where you learn the cause of different types of pain, and how to describe pain to your provider. Multiple treatment options will be described, including medication types and what precautions are needed when using them. We will NOT advise treatment for your pain but instead teach you to advocate for yourself or your child to get the treatment you need.

Ohana Education Dinner - (Bayer)- Maui 2/7/19

Thursday, February 7, 2019
6:30 pm8:00 pm
Maui Beach Hotel

Educational Dinner (Bayer) in collaboration with HTC Clinic-Maui
This will be an interactive session where you learn the cause of different types of pain, and how to describe pain to your provider. Multiple treatment options will be described, including medication types and what precautions are needed when using them. We will NOT advise treatment for your pain but instead teach you to advocate for yourself or your child to get the treatment you need.

Future Leaders

Saturday, February 9, 201910:00 amMonday, February 11, 20193:00 pm
Hilton Beach Hotel - Waikiki
Future Leaders

This will be an advocacy based educational event for Teens/Young Adults 14-21 in preparation for Legislative day on 2/11 with the ohana and local visits in their own districts with their ohana.

Ohana Advocacy Education Dinner

Sunday, February 10, 2019
6:30 pm8:30 pm
Hawaii State Capitol Building
Ohana Advocacy Education Dinner

Join us for a a chance to tell your story and engage with your legislative representatives that make YOUR Healthcare Law decisions.
ONCE you are registered, you will be sent travel information.
PLEASE also register for Legislative Day Feb 11th.

Legislative Day

Monday, February 11, 2019
8:00 am3:00 pm
Hawaii State Capitol Building
Legislative Day

Join us for a a chance to tell your story and engage with your legislative representatives that make YOUR Healthcare Law decisions.
ONCE registered a travel link will be sent to you to arrange travel.
PLEASE also register for Ohana Education Dinner on Feb. 10th.

Ohana Education Weekend

Friday, March 22, 2019Sunday, March 24, 2019
Hilton Beach Hotel - Honolulu
Everyone attending must register, regardless of age...This registration is for all OHANA . ONCE registered a travel link will be sent to you to arrange travel.
Ohana Education Weekend

Everyone attending must register, regardless of age...Attendees will have the opportunity to learn and hear from our industry partners about product updates, treatments, resources and services for the bleeding disorders community. Connect with the other community members to talk story. Programming will include youth and teen programming, as well as basic education on Hemophilia and von Willebrands for adults

Camp Koko Ohana 2019

Friday, June 7, 2019Sunday, June 9, 2019
Camp Mokule'ia on Oahu
Everyone attending must register INDIVIDUALLY, even the Keiki! ***DEADLINE: 5/15/2019*** Sorry, NO exceptions.
Camp Koko Ohana 2019

Join us on the North Shore of Oahu for Camp Koko Ohana. Travel day will be on Friday and Sunday, and we will spend the weekend relaxing at the camp as well as introduce you to various community topics that will enhance not only your weekend, but your life.
Program is designed for families w/bleeding disorders and thier houshold.
1 ticket per person registering seperately - EACH person (even the Keiki) must register seperately in system.

Hawaii Teen Summit 2019

Wednesday, June 19, 2019Sunday, June 23, 2019
Camp Mokule'ia
Everyone attending must register!
Hawaii Teen Summit 2019

Join us on the North Shore of Oahu. We will spend the week relaxing at the camp as well as introduce you to various teen transition topics that will enhance not inly your value in the community but society. Personal Advocacy, Hikes, Personal growth, Swimming, Budget and Scholarships are only a few of the topics and fun to be had by all!
Program is designed for Teens 13-19yo w/bleeding disorders, carriers and/or immediate siblings in the same household.

Annual Golf Tournament

Monday, July 8, 2019
8:00 am6:00 pm
Hokuli'a Golf Club -Kona
This is Golfer Online Registration for Annual Golf tournament. Foursome = $800... less than foursome adheres to single golfer price of $250 ea. Dinner only ticket - use single golfer registration, and chose dinner ticket for payment.
Annual Golf Tournament

We will be hosting our 3rd Annual Golf Classic on Monday July 8, 2019 at the picturesque Hokuli’a, a private course in Kona. The Charity Golf Tournament is one of our largest fundraiser of the year and our main source of revenue for the programs and services we provide to the bleeding disorders community. Funds raised from this event help us:
--Send Families with bleeding disorders to Family Camp – Koko Ohana and teens to Hawaii Teen Summit
--Deliver educational programming
--Provide financial assistance for those in need