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Frequently Asked Questions

Who can attend?

Please see the registration guidelines section on this page.

If you have any questions, please call 1.877.560.5833. 

 

Can people with a tolerized inhibitor attend?

Yes. Both people with active or tolerized inhibitors are able to attend. We believe that anyone with hemophilia A or B who has or had an inhibitor will benefit from attending one of the Inhibitor Summits.

 

How much does it cost to attend?

There is no cost to register for the Inhibitor Summit. Travel and hotel accommodations during the Inhibitor Summit are complimentary. Some meals and other incidental costs are eligible for reimbursement. Please note that a credit or debit card is required by the hotel at the time of check in for any incidental costs (hotel room rate will not be charged to your card). When a representative from NHF calls you, you will review the reimbursement guidelines in full. 

 

Why does NHF host an educational meeting just for those affected by hemophilia with an inhibitor?

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 a way that attendees can understand.

 

Will there be Spanish translators?

There is not translation at the National Inhibitor Summits, however, NHF will be hosting a Spanish Inhibitor Summit this year (Viviendo con Inhibidores). For more ifnromation, please visit the program webpage.

 

What about participant confidentiality?

What you hear and discuss at the Inhibitor Summit will not be shared without specific knowledge or permission. We want people to feel free to discuss topics openly.

 

Will childcare be available?

Yes. Childcare will be available for children ages 0-12. Children will be cared for groups by children that are the same or similar age as them. 

Independent of NHF, a contracted childcare company, a wholly separate entity from NHF, will provide professionally bonded childcare workers for the Inhibitor Summit programs. 

Some parents choose to bring their children to the Inhibitor Summits, while others choose to make it a parents-only weekend. If you do choose to bring your children and have them participate in childcare, expect a safe, caring, highly engaging, and interactive experience. For 9-12 year olds specifically, educational programming will be led by NHF.

NHF works with the childcare company on-site to make sure that they’re educated about bleeding disorders and that they are in close contact with parents on any questions they may have throughout the conference. This year, the childcare program will NOT include a fieldtrip.

“When I attended my first Inhibitor Summit, my son had only been in the care of me, my husband, or my mother. I was really hesitant to leave him with a stranger, but I thought it would be good for him, and me, if I signed him up for childcare at the Summits. He was able to meet and get to know other children in the community (and had tons of fun!) while I was able to focus on attending the sessions and meeting other moms. Overall, it was a good experience and now we look forward to the Inhibitor Summits every year!” -Inhibitor Summit Attendee/Mom with a son

“Sometimes my wife and I bring our sons to the Inhibitor Summits, and sometimes we don’t. Sometimes it’s sort of a weekend to getaway and focus on all of the sessions we attend at the Summits. Knowing that the Inhibitor Summits offer free childcare is reassuring for those times that we do bring our sons along!” -Inhibitor Summit Attendee/Dad with two sons

Please call 1.877.560.5833 for more information.

Teens ages 13-17 are encouraged to participate in our teen track, which has been developed with their interests and needs in mind. Teen Track is not part of childcare. Teens may choose to attend regular sessions or the ones in teen track, or a mix of both. All teens, whether affected or not, are required to attend sessions for the entire summit.

 

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

Yes.

 

What is expected of me at the meeting?

Each meeting is a great opportunity for you to listen, learn, and share with other members of the inhibitor community.

Attendance at all educational sessions is required. 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 people affected by inhibitors.

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 is required that all registrants attend each session.

At the end of the meeting, each attendee 13 years and older will be required to complete an evaluation form.

 

If I attended a summit or a regional conference before, will I gain anything from attending again?

Whether you are attending for the first time or returning, you may benefit from attending the National Summits. Every year the topics are kept current, presenting you with new opportunities to learn and connect with different people.