Additional Resources - Booklets & Binders |
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Living with Hemophilia (series) |
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Accredo’s Hemophilia Health Services, 2008
www.HemophiliaHealth.com
English, Spanish
Age-specific educational booklets cover
developmental events of different
life stages: 0–12 months, 1–5
years, 6–11 years, 12–18 years,
adult. |
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An Educator’s Guide to
Bleeding Disorders |
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Accredo’s Hemophilia Health Services, 2008
www.HemophiliaHealth.com
Gives educators a general overview of bleeding
disorders; answers common questions about recognizing
and responding to bleeds. Includes list of risk categories of
sports and activities; fill-in page for parents to note critical contact
information in the event of a bleed.
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A Coach’s Guide to Bleeding Disorders |
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Ruth Mulvany, MS, PT, 2008
Accredo’s Hemophilia Health Services
www.HemophiliaHealth.com
For sports coaches, scout leaders, physical
education teachers who supervise students with a
bleeding disorder. Includes overview of bleeding disorders; guidelines
for recognizing and responding to bleeds; list of risk categories
of sports and activities. |
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A Guide to Venous Access Devices |
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Accredo’s Hemophilia Health Services, 2008
www.HemophiliaHealth.com
English, Spanish
Outlines types of venous access devices for
people with hemophilia, highlighting major
benefits and drawbacks. Co-sponsored by Bayer
HealthCare: www.kogenatefs.com. |
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Inhibitors in Hemophilia A:
What Patients and Families Need to Know |
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Grifols
www.grifols.com
Overview of hemophilia. Topics include What is an
inhibitor? and What can be done about inhibitors? Provides inhibitor log for long-term use. |
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Dental Care (Series) |
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CSL Behring Choice Support Center, 2005
www.helixatefs.com
Four-part series on dental care for individuals
and families with hemophilia A, hemophilia
B, VWD: Dental Care for Infants, Toddlers, and
Preschoolers With Bleeding Disorders; Dental Care
for Children With Bleeding Disorders: Ages 5 to
10; Dental Care for Adolescents With Bleeding
Disorders: Ages 11 to 18; Dental Care for Adults With
Bleeding Disorders. |
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Educational Support Brochures |
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Novo Nordisk Inc.
www.novonordisk-us.com/biopharm
Contact your local HTC
Topics include introduction to inhibitors, surgery,
traveling with inhibitors, ER visits,
school teen issues, adult issues. |
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B2B Speaking from Experience |
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Coalition for Hemophilia B, 2006
www.coalitionforhemophiliab.org
Colorful booklet for adults and teens
shares personal experiences of factor IX
deficient patients. User-friendly
information for people already living successfully
with hemophilia B. Sponsored by Pfizer:
www.hemophiliavillage.com |
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B2B Speaking from Experience: A Guide for Mature Adults |
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Coalition for Hemophilia B, 2007
www.coalitionforhemophiliab.org
Provides helpful knowledge for making
informed life decisions and remaining
healthy today and in future. Sponsored by Pfizer:
www.hemophiliavillage.com |
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B2B Speaking from Experience: A Guide to the Preteen Passage |
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Coalition for Hemophilia B, 2009
www.coalitionforhemophiliab.org
Provides parents and caregivers of preteens with hemophilia B a “heads up” about the future from parents and caregivers who have raised preteens with hemophilia B.
www.hemophiliavillage.com |
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Living with Hemophilia B |
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Pfizer
www.hemophiliavillage.com
Colorful, comprehensive overview of hemophilia B. Topics
include genetic transmission, carrier testing, treatment,
resources, bleed symptoms, joint care, physical activities,
hemophilia as your child grows. |
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A Family Guide to Hemophilia B |
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CSL Behring Choice Support Center, 2005
www.helixatefs.com
Discusses unique challenges faced by families living
with hemophilia B, treatments, recent advances.
Includes easy-to-understand dosing tools, exercise guides,
self-infusion directions. |
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What is Mild Hemophilia? |
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National Hemophilia Foundation, 2008
www.hemophilia.org
Educates young consumers about coagulation, prolonged
bleeding, inheritance, common myths. Includes tips on
prevention, basic treatment options. Developed by HTC
nurses with support by Centers for Disease Control and Prevention. |
