Uninhibited Achievement Award 2007 |
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Uninhibited Achievement Award Program Recognizes the accomplishments of one person with hemophilia with inhibitors. The winner will be awarded a $5,000 donation to a charity of his or her choice, have an interview published in HemAware and various newsletters, and a night-on-the-town in Dallas. The winner will be announced at the Inhibitor Education Summit in Dallas in October, but will be notified ahead of time. To Enter: Individuals can either self-nominate or be nominated by a third party. A nomination form must be completed and mailed in. The nomination forms are available at HTCs and hemophilia chapters. They can also be downloaded from a promotional website: www.inhibitorsummits.com. Entries must be postmarked by August 15, 2007 for this year's award. Sponsored by Novo Nordisk. |
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Karing for Kids: Innovative Learning |
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Hemophilia Health Services Helps children with hemophilia and their families gain confidence and control in managing hemophilia. Live workshops, educational resources and other services. PARENTLine toll-free number provides support, education, resources and advice on parenting issues. Kids’ Corner resource library and Kids’ Workshops activities teach children about hemophilia. Directed by Diane Horbacz, MA, MEd. |
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The PEP Program (Parents Empowering Parents) |
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www.pepprogram.org Peer-to-peer skills program helps parents improve parenting skills, understanding and confidence. Topics include therapeutic relationships, response to bleeding episodes, behavior management, discipline and self-esteem. Team presentations by parents of children with bleeding disorders, social worker and nurse offer peer support and professional expertise. Available at selected US HTCs |
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School Preparedness Program |
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Coram Hemophilia Services National school preparedness program helps parents of children with hemophilia set the stage for a safe, happy and rewarding educational experience. Through a series of educational presentations, families and HTC staff learn how to educate school personnel and students about hemophilia: what it is, how it feels, how it’s treated, and how schools should respond. Families receive additional tools and educational materials to make preparing for a school easier. Coordinated and hosted by Coram patient advocates. |
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First Step |
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The National Hemophilia Foundation A program for new parents and families of children with bleeding disorders. |
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Passport for Life |
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Baxter BioScience Personalized online and print program helps hemophilia patients manage life and health. Offers goal-setting tools; quizzes and activities; educational resources; programs for stress and weight management, smoking cessation and nutrition. For adults. Special online health program for teens. |
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Inalex Communications Workshops for Families |
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Inalex Communications Workshops, teleconferences, and DVD's for families in the bleeding disorders community offer education and direct community support. Classes and DVD's are designed to empower families to deepen their relationships, better deal with the anxiety, frustration, stress and anger of living with a bleeding disorder. Life and executive coaches, social workers, PhD instructors, and bleeding disorders community leaders conduct sessions. |
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North American Camping Conference of Hemophilia Organizations (NACCHO) |
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Hemophilia Association, Inc. Funded by an unrestricted educational grant from Wyeth, and created and hosted by the Hemophilia Association, Inc. of Arizona. For planning, organizing and operating a bleeding disorder summer camp. Attendees include camp counselors, camp directors, infirmary staff, fundraisers, activities leaders and camp committee members. Nationally known presenters share useful camp resources and techniques, explore camp programs and activities, and facilitate networking and problem-solving. Attendees can exchange resource materials with other camps, meet with NHF representatives, pick up new ideas, and share their own. |
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Gettin' in the GameSM |
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CSL Behring Encourages kids with bleeding disorders to exercise, play sports and be physically active. Exercise can help people with bleeding disorders build stronger muscles and joints, and improve venous access. Sports and exercise build self-confidence, teach teamwork, and create a sense of community. Offers local events where children and families can learn sports tips, participate in appropriate exercises and warm-ups, and meet other kids with bleeding disorders. Contact your HTC or local NHF chapter. |
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The NHF-CSL Behring Junior National Championship |
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Contact www.helixatefs.com Encourages kids with bleeding disorders to be active and stay fit by participating in four baseball and golf regional competitions. Competitions include clinics, art programs, group exercises and awards. Four regional winners in golf and baseball receive a free trip for themselves and two accompanying adults to compete against other regional winners in the final round. |
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The Patient Notification System (PNS) |
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Plasma Protein Therapeutics Association Confidential 24-hour communication system provides information on plasma-derived and recombinant therapy withdrawals and recalls. System was created to provide consumers with a single, convenient source for up-to-date information. Developed by producers and distributors of plasma therapies with direct input from consumers. Registered patients receive automatic updates of product recalls and withdrawals. Administered by the Plasma Protein Therapeutics Association (PPTA). |
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Facts First |
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Baxter BioScience Educational series of programs for hemophilia patients and families, sponsored by Baxter BioScience and hosted by a chapter or HTC. Provides knowledgeable speakers, such as local physicians, national advocates and industry experts; addresses issues of importance to hemophilia community; and helps create camaraderie among families through engaging events. |
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Puppets as Teachers in Hemophilia (PATH) |
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Wyeth Pharmaceuticals PATH helps healthcare professionals teach children with hemophilia about their disorder using a specially-designed puppet. The Hemophilia Training Puppet was developed in conjunction with Patient Puppets, Inc., Winnipeg, Manitoba, Canada. Facilitates instruction about hematomas, a healthy knee joint, a bleeding joint, and venous access though an external catheter and a prominent vein. |
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Dads in Action |
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Dads in Action A network of involved fathers created to help fathers face the challenges of raising children with bleeding disorders. Provides answers, resources and educational programs that address many of the questions and situations encountered during a child¹s growth and development with a bleeding disorder. |
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A.C.C.E.S.S. |
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A.C.C.E.S.S. Advocating for Chronic Conditions, Entitlements and Social Services A.C.C.E.S.S. services are provided to |
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Coram Community Conference Calls |
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Coram Hemophilia Services A series of conference calls to listen, learn and interact with others in the bleeding disorders community. Patients, parents, community leaders and renowned clinical experts speak on a wide range of topics. You can participate while in your home, can remain anonymous, and no registration or participation fee is required. Calls are held at 7:00 p.m. EST on the last Wednesday of every month (except major holidays). Dial into the Coram conference call line at 866-213-1962, approximately 5 minutes before the call is scheduled to begin, then enter the 7-digit access code (252-2683) when prompted. Visit Coram's website for the most current list of speakers and topics. |
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