There are a myriad of opportunities available to educate patients with FVII, FIX deficiency and vonWillebrand Disease, as they are the most prevalent of rare bleeding disorders, but with an incidence of 1:500,000, very few resources exist to educate those who live with it… until now!
Comprehensive Health Education Services and the LadyBugs Foundation teamed up in 2012 to present the only national program of its kind for those affected by FVII; funding by an education grant from Novo Nordisk.
Join us for our sixth annual weekend of education, support, and fun for those affected by FVII deficiency and their families.
Comprehensive Health Education Services has some VERY exciting news to share!! The 6th Annual FVII Retreat will be held May 5-7, 2017 in Scottsdale, Arizona. You have asked us since we began this retreat to arrange for a researcher to obtain blood samples. We are THRILLED to tell you that this year, Dr. Diane Nugent, pediatric-hematologist from Children’s Hospital in Orange County will be attending with a team to make this dream come true! All family members living within the same household will be eligible for testing.
2017 Program Details
Friday, May 5th-7th, 2017
Location: Scottsdale Marriott at McDowell Mountains – Scottsdale, AZ
Sign Up for Notifications
We can send you reminders when new information is released about this program, such as dates, locations, and the start of open registration. Complete your communications profile to choose what you want to keep up on.
Note: If you’ve completed this form in the past, it is not necessary to fill it out again. We keep your information to use each and every year! If your information has changed, please complete this form once again.
Registration – CLOSED for 2017
Participants in 2017 will be required to complete a physician verification of FVIId. This form will be emailed within 5 business days to those who pre-registered. This form must be completed and returned to CHES for verification prior to registration. Specific instructions will be included on the form.
Verified, eligible participants will be notified by 3/20/17. We ask for your patience through this process as (1) we know there will be tremendous interest, and (2) we are introducing a new registration platform.
Primary registration opens 3/24/17. Registration links will be emailed to those who have been verified for eligibility. Registration completion does not guarantee acceptance to the program.
Registration acceptance will be determined by CHES as we have a variety of variables to consider. Find a full list of important dates at the bottom of this page.
Frequently Asked Questions
Still have more questions? Contact us at: email@example.com, or (781) 878-8561
Who can attend?
Anyone diagnosed with FVII deficiency (by a physician) and their immediate family (those who live under the same household.)
Pre-registrants who have not attended in the past will be given first priority, on a first-come, first-served basis. Those who have previously attended will be provided with remaining space on a first-come, first-served basis.
Where is the nearest hospital?
The Arizona Hemophilia and Thrombosis Center at Phoenix Children’s Hospital is less than 30 minutes away. Other local hospitals include HonorHealth Shea and Osborn Hospitals and the Scottsdale Liberty Hospital.
Where is this year's program being held?
Inside the Scottsdale Marriott at McDowell Mountains located at: 16770 North Perimeter Drive, Scottsdale, Arizona 85260 USA
Will the location be accessible to wheelchairs and other mobility devices?
How much does it cost to attend?
There are no costs associated with attending the FVII Retreat. Travel related expenses including tolls, mileage and parking will be reimbursed. Air transportation will be arranged for you. All meals will be provided on site.
What should I bring?
Your factor and supplies, as there will not be any on site. Also bring your enthusiasm and willingness to reach out so we can learn from each other!
Will there be child care available?
Childcare will be provided on site during educational sessions for children ages newborn to 12. Children ages 13 and over will have their own separate teen sessions all weekend. Children ages 3 and over will be attending a field trip to the Arizona Science Center in Phoenix on Saturday.
What about patient confidentiality?
Information that you share or hear will be treated with the utmost respect and never disclosed without your permission. We want participants to feel comfortable so that we may support one another.
Important 2017 Registration Dates
Friday, February 24th – Pre-Registration opens at 9a (EST)
Friday, March 3rd – Physician Verification of FVIId forms will be sent out to those who pre-register
Monday, March 20th – Physician-verified, eligible participants will receive notice of acceptance
Friday, March 24th – Primary registration begins at 9a (EST). Links will be emailed out. Physician verification is required
Monday, April 17th – Notification of acceptance to attend for eligible participants will begin
Monday, April 24th – Primary registration closes at 11:59p (EST)
Tuesday, April 25th – Arranged travel for all attending guests will be completed
Made possible by an educational grant from: