Frequently Asked Questions
Who can attend?
Adults, teenagers and children with hemophilia A or B who currently have or once had inhibitors and their caregivers are welcome to attend the meetings. Also, because we want the meetings to be occasions for networking and sharing ideas, we encourage a staff representative from each hemophilia treatment center (HTC) and chapter to attend. Our goal is to bring together the patient community and healthcare professionals.
Please note: If you are a chapter or HTC staff member, you will be responsible for your own travel and lodging expenses.
I have had an inhibitor but currently do not have a titer. Can/should I attend?
Yes. We believe that anyone with hemophilia A or B who has had an inhibitor (and has undergone immune tolerance therapy) will benefit from attending the meeting.
How much does it cost to attend?
There is no registration fee associated with attendance, unless you are a healthcare professional, chapter staff member, or industry attendee. Travel and lodging assistance for eligible patients and their caregiver(s) covers such expenses as tolls, mileage, train tickets, airfare and hotel accommodations. All meals are provided onsite at the meeting. Please call 1.877.560.5833 for more information.
Why have patient education meetings just for inhibitor patients?
When it comes to living with hemophilia A or B with inhibitors, there is a lot to talk about. These meetings present a unique opportunity for learning, sharing and networking.
Sometimes I do not understand the words that doctors and nurses use. Will the meeting be "over my head"?
The National Steering Committee has made sure that all presentations will be delivered in language that patients and their families can understand.
Will there be Spanish translators?
NHF will offer an Inhibitor Summit for Spanish-speaking families this year in the Spring. We recommend that families that speak Spanish as first language attend this meeting. Translation will not be provided at the larger Inhibitor Summits. For more information about the Spanish Summits, please call 1.877.560.5833.
Will there be a lot of walking involved?
No. All meeting spaces, including rooms where breakout sessions and meals will be held, will be in one area of the hotel. They are fully accessible to wheelchairs and other mobility devices.
What about patient confidentiality?
What 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.
Will childcare be available?
Yes. There is childcare for infants 0-3 and an Interactive Educational Camp for Youths for children 4-12. NHF staff and volunteers will provide supervision and facilitation. Independent of NHF, the contracted childcare company, a wholly separate entity from NHF, will provide professionally bonded childcare workers for both programs. Please call 1.877.560.5833 for more information.
Will the location be accessible to wheelchairs and other mobility devices?
What is expected of me at the meeting?
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 the discussions and ask questions. Our hope is that you will feel comfortable talking openly with both healthcare professionals and other inhibitor patients and their families. The 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. At the end of the meeting, each attendee will be required to complete an evaluation form.
If I attended a summit before, will I gain anything from attending again?
The inhibitor community has created the summit meetings for you. Whether you are attending for the first time or returning, you will benefit from attending the meeting. Every year the topics are kept current, presenting you with new opportunities to learn and connect with different people.