FAQs
Who can attend?
Anyone diagnosed by a physician with an ultra-rare factor deficiency (excluding FVIIId, FIXd, & vonWillebrand’s) or a rare deficiency (including Glanzmann’s Thrombasthenia) and their immediate family. This includes anyone living in the same household.
However, we work diligently to create a patient-centric experience and an environment that fosters relationships at a psychosocial level; therefore, at least one individual with the diagnosis must be present during the course of the program.
U.S. residents only.
What is a HYBRID program, and what does that look like?
The program will be ran both In-Person and Virtually simultaneously to accommodate for attendees’ preferences and/or specific situations.
The In-Person experience will run as usual from past years. Attendees will arrive Friday afternoon to settle into their rooms and depart on Sunday around noon. During their stay, folks can learn through the available sessions, socialize with other attendees, and join us for meal times and planned activities.
Those who attend virtually will receive Zoom invitations to the education sessions offered at the live event. Virtual attendees can choose which sessions they would like (or are able) to watch with the live audience where they can participate through Q&A and any other interactions planned for each session. *Note, certain sessions may not be available for the virtual option.
How much does it cost to attend?
In the past, there have been no costs associated with attending One Drop’s preceding programs. Travel related expenses including tolls, mileage and parking were reimbursed, and air transportation was arranged for participants.
With tighter budgets and stricter industry guidelines, air travel costs for participants is becoming more difficult to cover. We are pleased to announce that airfare, once again, will be provided at no cost. But the budget size is smaller than previous years, therefore, a limited number of participants will be allowed to attend. We ask for your patience as we sort through registrations and make every effort to maximize attendance.
We are encouraging participants who are within driving distance to travel via car to cut down on costs.
Every program has different funding parameters, so reimbursable items and guidelines can differ for each of them. But our general reimbursement policies can provide a good idea of what’s expected for expenses including tolls, mileage, and parking. All meals will be provided on site.
What should I bring?
Your factor/meds 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.
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.
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.
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.
Will the location be accessible to wheelchairs and other mobility devices?
Absolutely!
