Save the date for the next NOW Conference: May 17-19, 2019
Follow our NOW Facebook Page for updates!
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 send us an email at NOW@arizonahemophilia.org or call 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 send you the information to complete your deposit. 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 will be provided and breakfast, lunch and dinner will be provided on Saturday. Breakfast and boxed lunches will be provided on Sunday.
NOW Conference – 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 are at their adult programming, we have the youth split up into two different groups 0-4, 5-12. The 0-4 age group are entertained by nannies.
The 5-12 age group participate in multiple educational and fun activities including Coyote Camp, which is a youth program of the hotel that we use for the conference. Kids that go to Coyote Camp also visit the pool.
We encourage teens, 13 and up, to attend sessions with their parents.