Frequently Asked Questions
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Q: Why have patient education meetings just for inhibitor patients?
A: When it comes to living with hemophilia with inhibitors, there is a lot to talk about, which makes it surprising that there have not been specific educational opportunities for patients with inhibitors and their caregivers. These meetings present a unique opportunity for learning, sharing, and networking.
Q: Who can attend?
A: Adult, adolescent, and pediatric patients who currently have, or once had, inhibitors; and their caregivers are welcome to learn, participate, and network at the meetings. The agenda is designed to focus on topics of interest for people who currently have, or once had, inhibitors, their families, and caregivers.
Also, because we want the meetings to be occasions for networking and sharing ideas, we encourage a staff representative from each hemophilia treatment center and chapter to attend. Our goal is to bring together the patient community and healthcare professionals.
Q: I have had inhibitors but currently do not have a titer. Can/should I attend?
A: Yes. We believe that anyone who has or has had inhibitors (and has undergone immune tolerance therapy) will find value in attending.
Q: Will the topics at the 2 summit meetings be the same in each city?
A: Yes. The agenda topics were selected because of their importance and degree of interest to the inhibitor community. The reason for two meetings is to provide potential attendees around the country with choices as to where and when they can attend.
Q: What do I receive after I have registered? When will I receive it?
A: Before the summit that you are attending, you will receive a welcome letter via mail that includes the following information (if applicable):
- Driving directions to the hotel
- Flight confirmation and ground transportation information
- Confirmations for dinner attendance on Friday and Saturday
- Confirmation for child care reservation
- Expense reimbursement information
- Weather information
- Agenda and Breakout Session details
Q: When does the meeting start?
A: Summit Safari for first-time summit participants begins at 4:00 PM Thursday afternoon. The official Summit Kickoff greeting for all participants begins promptly at 8:45 AM Friday morning.
Q: When does the meeting end?
A: 2:15 PM Saturday afternoon. However, all attendees are invited to attend dinner to officially close the successful day.
Q: What is Summit Safari?
A: This session will provide you the opportunity to become acquainted with other families attending an Inhibitor Education Summit for the first time. You will also have the opportunity to interact with experts on hemophilia with inhibitors who will provide you with additional educational information. We encourage you to take this time to ask questions and familiarize yourself with what this program has to offer.
Q: Do I have to/can I stay over on Saturday evening?
A: It is not a requirement for attendees to stay Saturday evening. A dinner is planned for Saturday evening to give meeting participants a chance to network in a relaxed setting. There is no cost, and everyone is invited to attend. More information about the dinner will be included in the welcome packet you will receive at the meeting.
Q: What is the Youth Camp Family Activity?
A: Caregivers are not the only ones learning at the summits. Children that attend the Youth Camp will participate in an activity with their caregiver(s), and have the opportunity to show their parents all that they have learned during their time at "camp."
Q: What is the difference between "general" sessions and "breakout" sessions?
A: During the general sessions, speakers will lead discussions for the summit participants as a whole. However, we do realize that some topics mean more to certain patients than to others. The purpose of offering breakout sessions is so that patients can choose from topics that appeal to their individual interests.
Q: Who is speaking?
A: A list of speakers is available here.
Q: Sometimes I do not understand the words that doctors and nurses use. Will the meeting be "over my head"?
A: The National Steering Committee has made sure that all presentations will be delivered in everyday "patient language."
Q: Will copies of the presentations be made available?
A: Yes. Copies will be available during the meeting for easy reference and to allow attendees to take notes.
Q: Will there be a lot of walking involved?
A: No. All meeting spaces, including rooms where breakout sessions and meals will be held, will be in one area of the hotel. Locations are accessible to wheelchairs and other mobility devices.
Q: What about patient confidentiality?
A: Everything you hear and discuss at the meeting will not be shared without specific knowledge or permission. We want people to feel free to discuss topics openly.
Q: Will there be Spanish translators?
A: Spanish-speaking translators will be available at each of the summits this year. Please call 1-(888)-706-6867 for more information.
Q: How much does it cost to attend?
A: There is no registration fee associated with attendance, unless you are a healthcare professional and/or industry attendee. Travel and lodging assistance is available to cover related travel expenses for eligible patients and their caregiver(s). Please call 1-(888)-706-6867 for more information.
Q: Is there a cost for food?
A: No. The CBCE™ (The Center for Biomedical Continuing Education) is providing all group meals offered on-site at the meeting.
Q: What does travel and lodging assistance cover?
A: If you are eligible, travel and lodging assistance will be available to patients and their caregiver(s) to cover transportation expenses such as tolls, mileage, train tickets, and airfare. A hotel room for Friday and Saturday nights and on-site meals are included at no charge. Incidental expenses, mini-bar use, and in-room pay-per-view movies are the responsibility of the individual.
Please note: travel and lodging assistance will not be provided for healthcare professionals and industry attendees.
Q: Will child care be available?
A: Yes, child care providers will be available for infants and children up to age 12. Complimentary child care will be available beginning Friday at 8:00 AM until 4:15 PM and on Saturday from 7:30 AM to 2:15 PM. Child care during evening activities is available for an hourly fee.
Q: How should I dress?
A: You should dress in casual, comfortable clothes. The conference room could be cold, so we recommend you bring a light sweater or jacket.
Q: Will I have access to a refrigerator to store factor product?
A: Yes. When you register with us, please request to have a refrigerator in your room for this purpose.
Q: Will the location be accessible to wheelchairs and other mobility devices?
A: Yes. One of the reasons for hotel selection is that it must be accessible to wheelchairs and other mobility devices.
Q: What is expected of me at the meeting?
A: The summit meetings are a great opportunity for you to listen, learn, and share with other members of the inhibitor community. Attendance at all of the educational sessions is expected. We encourage you to share your experiences during discussions and ask questions. Our hope is that you will feel comfortable talking openly with the healthcare professionals, as well as other inhibitor patients and their families.
Our agenda has been carefully designed by a National Steering Committee of highly respected people in the hemophilia community, specifically for your benefit. In order to receive the full value of the meeting, it will be necessary to attend all sessions. Each attendee will be required to complete an evaluation form.
Q: If I attended a summit before, will I gain anything from attending again?
A: The inhibitor community created the summit meetings for you. Whether you are attending for the first time or returning, your experience will be beneficial. Every year the topics are kept current, presenting you with new opportunities to learn and connect with different people.