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FVII Retreat

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; funded by an education grant from Novo Nordisk.

Join us for our 8th annual weekend of education, support, and fun for those affected by FVII deficiency and their families.

Supported by an educational grant from:

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Scheduled: Friday, Nov. 8th-10th, 2019

Hilton Austin Airport Hotel
9515 Hotel Drive
Austin, TX 78719

2019 Registration: Open

(Closes 10/25/19 at 11:59p EST)

Participants 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.

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.

Notifications

We can send you reminders when new information is released about events, such as dates, locations, and the start of open registration. 

*If you’ve completed the notification sign-up 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.

*If you’ve completed the notification sign-up 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.


Important 2019 Registration Dates:

Friday, July 26th: Pre-Registration opens at 9a (EST)

TBA: Physician Verification of FVIId forms will begin to be sent out to those who pre-register and have not completed one in the past.  Please allow us up to 5 business days upon your pre-registration completion.

TBA: Physician-verified, eligible participants will receive notice of acceptance. 

TBA: Primary registration begins at 9a (EST). Links will be emailed out.  Physician verification is required.

TBA: Notification of acceptance to attend for eligible participants will begin

Friday, Oct. 25th: Primary registration closes at 11:59p (EST)

TBA: Arranged travel for all attending guests will be completed


FAQ

Still have more questions?
Contact us at: info@ches.education or (781) 878-8561.

Who can attend?
Anyone diagnosed with FVII deficiency (by a physician) and their immediate family (those who live in 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 in accordance with a variety of variables.

U.S. residents only.

Will the location be accessible to wheelchairs and other mobility devices?
Absolutely!

How much does it cost to attend?
There are no costs associated with attending once the trip is completed. Because of numerous, last-minute cancellations, we will be enforcing fully refundable deposits for those who attend the program. Deposits will be set at $25/person, not to exceed $100/family.  Travel related expenses including tolls, mileage and parking will still be reimbursed. Air transportation will be arranged for you.  All meals will be provided on site. Learn more on our policies and guidelines page.

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!

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.

Is it an all-day thing?
This is an all weekend event! Friday to Sunday! We fly all the families in on Friday afternoon and fly everyone out after the event ends on Sunday afternoon.

Do we meet back up at some point to see each other during the day?
Yes! There are breaks in between sessions that you can check in on the kids. Around 4/5pm on Saturday we’re done with sessions for the day, everyone gets a little rest and then we have a final night dinner/event with EVERYONE from 6-7pm till about 10pm.

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 on Saturday.

If my child decides he/she is not comfortable being separated at a session how do you handle this?
Childcare is always near the session rooms where you will be. It’s not unusual for children (especially toddlers) to become upset during drop-off, but the nanny services are trained in these situations, and most children adapt well once the parents leave the room. If anything were to happen or they needed you, the nannies would either call or come get you.

Do you do background checks on childcare?
Yes.

I see that our family will be divided out into groups. How does that work?
Parents follow a track Saturday during the day and Sunday morning. Kids under the age of 13 have a room at the hotel where they will be watched by a nanny service that we contract with locally to the venue area, who are all background checked.
The teenagers have their own track for the weekend for the most part. Parents and younger kids do an icebreaker on Friday night, and then the teens have their own separate icebreaker. Most of Saturday, the teens will be in team building blocks with others like themselves.

Are we all staying in the same location for the meeting and field trips?
The 4-12 age range go on a field trip at a nearby location for a good portion of the day on Saturday. We also use some of the staff from the nanny service to go with the kids on the field trip in addition to a couple CHES staff members that are able to handle any kind of bleeding emergency, and/or transport someone back to the hotel should the need arise.
The parents stay at the hotel for educational sessions while this trip happens.