For Patients and Caregivers

You are not alone. Get the help you need to improve your quality of life.

A NEW program has been designed to connect, inspire, educate, and empower adult patients with hemophilia with inhibitors and their primary caregivers (spouses, parents, and significant others).

Diagnosis and management of hemophilia with inhibitors can be overwhelming, and even day-to-day life can be a challenge. Many people feel they are on their own with hemophilia with inhibitors. The Adult Inhibitor Summit was created to provide an opportunity for patients and their caregivers to connect with others, discuss common experiences, and share support in the management of this difficult condition.

We are currently seeking patients and their caregivers who are:

• Not currently in the regular care of a hemophilia treatment center (HTC)

or who are

• Seeking answers regarding their health care and opportunities to connect with other patients

As well as allowing time for interaction and networking with other adult patients and their caregivers, the Adult Inhibitor Summits will provide an opportunity for patients to interact with clinical experts on hemophilia with inhibitors.

Attendees of the Adult Inhibitor Summits will learn about:

• The latest advances in the treatment and management of hemophilia with inhibitors
• Prevention and treatment of joint disease
• Management of the life issues associated with this condition such as work, relationships, and the emotional burdens that these patients with this condition bear

The agenda includes a general session for the entire group of patients and caregivers as well as an opportunity to break into smaller groups for more personal and individualized interactions.

Topics that will be covered include:

• Current and Future Approaches to Treatment
• Living With Arthritis: Medical and Surgical Therapies
• How to Be an Advocate for Yourself

Opportunities for organized discussion between patients and a healthcare professional include:

• Anxiety and Depression (patient focused)
• Challenges in the Caregiver Role (caregiver focused)
• Vocational Issues
• Hepatitis C and HIV Exposure
• Venous Access

We have teamed up with the following experts in hemophilia with inhibitors to develop a comprehensive and engaging program:

Program Chair:
Barbara A. Konkle, M.D.
Professor of Medicine and of Pathology and Laboratory Medicine
Director, Penn Comprehensive Hemophilia and Thrombosis Program
University of Pennsylvania

National Steering Committee:
Val Bias
CEO
National Hemophilia Foundation
New York, NY

Matthew Compton
Adult patient with hemophilia with inhibitors
Simi Valley, CA

Carolyn Francis, RN, CNP
Nurse Coordinator
Georgetown University Center for Hemophilia and Thrombophilic Disorders
Washington, DC

Charles P. Gilbert II, ACSW
Clinical Psychiatric Specialist
Hemophilia Treatment Center of Central Pennsylvania
Hershey Medical Center
Hershey, PA

Currently scheduled Adult Inhibitor Summits:

Adult Inhibitor Summit I: October 17-19, 2008, Philadelphia, PA
Click here for a list of confirmed faculty and the program agenda.

Adult Inhibitor Summit II: November 7-9, 2008, Chicago, IL
Click here for a list of confirmed faculty and the program agenda.

Adult Inhibitor Summit III: November 21-23, 2008, Dallas, TX
Click here for a list of confirmed faculty and the program agenda.

REGISTER NOW! Space is limited to 8 adult patients and their primary caregivers per city.

• Travel and lodging assistance are available for qualified patients and their immediate caregiver to cover expenses
• On-site child care is provided for children ages 0-3 and a youth program is available for children ages 4+
• Locations are accessible by wheelchair and other mobility devices

Have questions about registering for or attending an Adult Inhibitor Summit? Please call the CBCE toll free at (888) 706-6867 or e-mail inhibitorsummits@thecbce.com. Atención: los representantes hablan español.