Additional Resources
The Hemophilia and Thrombosis Center at Cincinnati Children's Hospital Medical Center lists local and national resources for patients and families.
Local and National Foundations
- Greater Cincinnati / Northern Kentucky Chapter of the National Hemophilia Foundation
- Aids people with hemophilia and other clotting disorders
- Focus on education of lay and professional groups, direct support for families and individuals with hemophilia, as well as service projects
- Contact: 513-961-4366, hemophilia@fuse.net
National Hemophilia Foundation Funds major hemophilia research, advocates for governmental reform, organizes support networks and develops hemophilia-related literature Sponsors annual meeting that incorporates both families and professionals Major topics of interest are discussed and new treatments and procedures are reviewed Contact: 1-800-42-HANDHANDI (Hemophilia and AIDS / HIV Network for the Dissemination of Information) 24-hour information center of the National Hemophilia Foundation Collects and makes available information on hemophilia, von Willebrand Disease, other bleeding disorders and AIDS / HIV as it relates to hemophilia Provide information over the phone, supply materials by mail, and handle more complicated requests Contact: 1-800-42-HANDIWeb Resources
Books and Pamphlets
- You Can Do It! Exercise, Sports, and Young Women with vWD
This resourceful, skill-building booklet from Aventis Behring encourages and helps women of all ages incorporate regular physical activity into their daily lives. Besides a review of von Willebrand's Disease (vWD), the booklet offers practical medical tips, ideas for coping with negative thoughts, a coping exercise and coping tools, tips for finding the right physical activity for you, and charts for monitoring your progress. Learn more at www.allaboutbleeding.com, or ask your health care team for your copy of the "You Can Do It!" brochure from Aventis Behring. - Parent Empowerment Newsletter (PEN)
PEN is a newsletter designed for families affected by bleeding disorders and is produced by a parent of a child with hemophilia. The goal is to offer an unbiased forum that promotes an active exchange of information and support among divergent groups in the national and international hemophilia community.
For subscription information, contact:
LA Kelley Communications, Inc.
68 East Main Street, Suite 102
Georgetown, MA 01833
www.kelleycom.com (online subscription available) - Passport for Life: A Support Program for Everyday Living with Hemophilia
This comprehensive support program from Baxter International Inc. and HealthMedia encourages appropriate treatment adherence and patient support, such as dealing with stress, managing time and coping with infusions, throughout all stages of life. It is designed for caregivers of children with hemophilia, teens with hemophilia, and adults with hemophilia. Ask your treatment center for your copy of the "Passport for Life" information kit, log on to www.passportforlife.com or call toll-free 866-433-9284, - Do the 5: A Guide for Living with Hemophilia
This comprehensive guide, distributed at this year's Camp Joy, is the National Hemophilia Foundation's prevention program. In it, you'll find a well-organized set of fact sheets covering all the essentials that you need to know about living with this chronic condition, including treatments centers; hepatitis A, B and C; early and adequate treatment; exercise; blood-borne infections; and universal data collection (UDC). Do you need a copy for your home library? Ask your health care team, or contact NHF's information service, HANDI, at 1-800-42-HANDI or info@hemophilia.org.
