Registración para la Conferencia NOW empieza en noviembre de 2016 y de abril de 2017. La conferencia abrió el 1º de septiembre de 2016, y se cierra el 26 de septiembre de 2016.
NOW is a national educational conference for individuals and families who are living with this chronic disorder. It is a forum to learn about new medical advances, to gain tools that can help you better manage von Willebrand Disease (VWD), and to share with others facing the same or similar challenges. We will bring expert healthcare professionals who can best address the issues unique to VWD. With funding by a grant from CSL Behring, the Arizona Hemophilia Association is excited to organize this national conference focused specifically on von Willebrand Disease.
What is NOW?
NOW stands for National Outreach for von Willebrand. Over the years, von Willebrand Disease (vWD) has always been “lumped” in with hemophilia. Well, NOW is the time to focus exclusively on von Willebrand Disease! NOW is a national educational symposium for individuals and families who are living with this chronic disease. It is a forum to learn about new medical advances, gain tools that can help you manage vWD and to share with others facing the same or similar challenges. We will bring in expert healthcare professionals who can best address the issues unique to vWD. Funded through a grant by CSL Behring, the Arizona Hemophilia Association is excited to host this national conference focused specifically on von Willebrand Disease.
Why Should You Attend?
Be part of the National von Willebrand Disease Conference dedicated exclusively to those affected by the disease. Participants will be given the opportunity to come together with other individuals around the country with vWD to network, gain knowledge and have fun! Those who attend will be given the tools necessary to start their own local vWD Support Group, allowing the information gained from the conference to be shared at the local chapter level.
Who is Eligible?
Attendees must have von Willebrand Disease and/or be a caretaker of someone who has it. The conference is funded to accept a limited number of participants. We encourage each chapter to reach out to the vWD Community in their local area to make them aware of this unique opportunity. Families are welcome and there will be educational activities and daycare for children.
Participants will be given the opportunity to come together with other individuals around the country with von Willebrand Disease to network, gain knowledge and have fun! Those who attend will be provided tools to start their own local VWD support group, allowing the information gained from the conference to be shared at the local chapter level.
The conference is generously sponsored by CSL Behring.
If you are interested and would like to know more, please contact us at (602) 955-3947.
Read below for comments from attendees and speakers:
“Thank you so much for your involvement in this event. I cannot put into words how much this means to me.”
“I have never in my life heard so much talk about von Willebrand Disease Type 2B. It is so validating to hear this!”
–Attendee (speaking after presentations made by Dr. DiPaolo and Dr. Kouides)
“I am so grateful to you all for organizing this conference. I have dreamed about a program similar to this one ever since I can remember.”
“My career involves putting together large national conferences. It is apparent that you all hit this one out of the park. Everything flowed smoothly.” -Attendee
There is a refundable deposit of $50 for an individual or $100 per family to attend the conference. Once your application has been accepted, we will contact you for your credit card information. Failure to respond in a timely manner could jeopardize your acceptance to the conference.
What is Included
If a flight to Phoenix is needed, it will be provided as well as a shuttle or taxi to the resort. Conference and hotel rooms for the dates of the conference will be provided. Dinner for Friday the 20th will be provided and breakfast, lunch and dinner will be provided on the 21st. Breakfast and boxed lunches will be provided for the 22nd.
NOW Conference 2014 – Youth Programs
As part of the planning committee for the youth programming at the NOW conference, we try to find the delicate balance between providing education for the youth, but also having some fun.
While the parents were at their adult programming, we had the youth split up into three different groups 0-4, 5-12, 13-17. The 0-4 age group was able to see a puppet theater, work on art projects, watch movies and even paint some balloons.
The 5-12 age group participated in painting, a mad science session, and Coyote Camp, which is a youth program area of the facility that we used for the conference. This group also had educational programming at Coyote Camp with a version of a Clotting game and making ice cream sundaes!
We decided this year that the teens should have some focused intentional programming, so the topic chosen was Advocacy. We used an advocacy program developed from another national entity to work with the kids. In the morning we had the ever popular icebreakers and introduction games, then went straight into the advocacy workshop portion. This program consisted of several activities to encourage getting out of your “comfort zone”. We then discussed what advocacy was and how they were advocating all the time to the people that they knew. We encouraged them to stretch their comfort zones and discuss bleeding disorders with people they didn’t know. This consisted of going through some role-play and using some information cards developed specifically for this activity. The front side of the card has a picture with a statement that says Von-Willie What??? And the backside of the card has some key educational bullet points, for the youth to disseminate to the person they’re talking to. After the completion of the workshop, we rode on a double-decker bus to GameWorks at Arizona Mills Mall. We were treated to pizza and dessert for lunch, then paired off and swarmed the mall with almost 30 teenagers, passing out almost 10 cards each. That’s almost 300 cards to complete strangers, educating them about von Willebrand Disease. This was an amazing accomplishment for many of the teens and taught them how important advocacy was, yet how easy it could be. After an hour of blanketing the mall with information, they were treated to 2 hours of unlimited arcade games. On Sunday we had a debrief session discussing the advocacy workshop from the day before, then enjoyed laser tag and world champion yo-yo, as well as continued team-building activities. There were many barriers broken that day with the teen group and understanding that advocacy can be shown in many forms, and that many of us do it day in day out, and just don’t realize it.
This year’s youth program was described as the best year yet, and it was quite obvious that many of the youth were educated on von Willebrand Disease as well as gained personal growth with the experiential education of advocacy and their role as future leaders.
Donald “Ziggy” Douglas
NOW, Youth Programming Staff