Why have a patient education meeting just for inhibitor patients?

Who can attend?

I've had an inhibitor but currently don't have a titer. Can/should I attend?

Will the topics at the 2 summit meetings be the same in each city?

What do I receive after I have registered?

When does the meeting start?

When does the meeting end?

Do I have to/can I stay over on Saturday evening?

What is the difference between "general" sessions and "breakout" sessions?

Who is speaking?

Sometimes I don't understand the words that doctors and nurses use. Will the meeting be "over my head"?

Will copies of the presentations be made available?

Will there be a lot of walking involved?

What about patient confidentiality?

Will there be Spanish translators?

How much does it cost to attend?

Is there a cost for food?

What does travel and lodging assistance cover?

Will child care be available?

How should I dress?

Will I have access to a refrigerator to store factor product?

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

What is the Storytellers Lounge?

What is expected of me at the meeting?

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

When it comes to living with hemophilia with inhibitors, there's a lot to talk about, which makes it surprising that there haven't been specific educational opportunities for patients with inhibitors and their caregivers. These patient education meetings present a unique opportunity for learning, sharing, and networking that inhibitor patients have not had before. The success of the first-ever summit in 2005 confirmed the need for such an opportunity.

Adult, adolescent, and pediatric patients who currently have inhibitors or who once had inhibitors, and their caregivers are welcome to learn, participate, and network at the meetings. The agendas focus on topics of interest for people who currently have or once had an inhibitor, 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 HTC and chapter to attend. Our goal is to bring together the patient community and healthcare professionals.

Yes. We believe that anyone who has, or has had, inhibitors (and has undergone ITT) will find a lot of value in attending.

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.

Before the summit that you're attending, you will receive a welcome letter 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
• Expense reimbursement information
• Weather information
• Agenda and Breakout Session details

The first breakout session begins at 1:00 PM Friday afternoon, promptly. There will be 2 special lunch sessions, 1 on Inhibitors to Factor IX and 1 on Managing Co-Infection, that will begin at Noon. Registration in advance is required for these sessions.

5:00 on Saturday afternoon. However, all attendees are encouraged to attend dinner to officially bring a close to a successful day.

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 encouraged to attend. More information about the dinner will be included in the welcome packet you'll receive at the meeting.

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.

A list of speakers is available here.

The National Steering Committee has made sure that all presentations will be delivered in everyday "patient language."

Yes. Copies will be available during the meeting for easy reference. There will also be writing materials available so that attendees can take notes.

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.

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.

Spanish-speaking translators will be available at each of the summits this year. Please call 1-888-706-6867 or e-mail inhibitorsummits@thecbce.com for more information.

There is no registration fee associated with attendance unless you are a healthcare professional or Industry representative. Travel and lodging assistance is available to cover related travel expenses for eligible attendees. Please call 1-888-706-6867 or e-mail inhibitorsummits@thecbce.com for more information.

No. The CBCE is providing all group meals offered on-site at the meeting.

If you are eligible, travel and lodging assistance will be available to patients and their families to cover transportation expenses such as tolls, mileage, train tickets, and airfare. Your hotel room for Friday and Saturday night and on-site meals are included at no charge. Incidental expenses (such as mini-bar use, in-room pay-per-view movies, and so forth) are the responsibility of the individual.
Please note: travel and lodging assistance will not be provided for healthcare professionals.

Yes, child care providers will be available for infants and children up to age 12. Complimentary child care will be available beginning Friday at 12:30 PM until 5:30 PM and on Saturday from 8:00 AM to 5:30 PM. Child care during evening activities will be available for an hourly fee.

You should dress in casual, comfortable clothes.

Yes. When you register with us, please request to have a refrigerator in your room for this purpose.

Yes. One of the reasons for hotel selection is that it must be accessible for wheelchairs and other mobility devices.

The Storytellers Lounge is a place for anyone who wants a special place to talk. We encourage you to visit the Storytellers Lounge to spend time with other people who share similar experiences.

The summit meetings are a great opportunity for you to listen, learn, and share with other members of the inhibitor community. We hope that you will share your experiences during discussions and ask questions. Our hope is that you'll 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, so in order to get the full value of the meeting, it will be necessary to attend all sessions.

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.