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Tools for Coping with Bleeding Disorders

This website is an effort to compile a comprehensive list of resource for parents and family members of children with bleeding disorders

Content:

• Medical Information Concerning Bleeding Disorders
• National Organizations Dedicated to Bleeding Disorders
• Information on Bleeding Disorders from Children's Hospital
• Drug Company and Home Health  Care Company Websites on Bleeding Disorders
• Online Support Groups Related to Bleeding Disorders
• Parent Education Presentation: Raising a Child with a Bleeding Disorder

Medical Information Concerning Bleeding Disorders

• eMedicine
  • Hemophilia
  • Hemophilia A and B
  • Hemophilia C
  • Von Willebrand Disease
• CDC: Centers for Disease Control and Prevention
  • Bleeding Disorders
  • Blood Safety Facts, Hereditary Blood Disorders
  • ProviderGuide: Basic Concepts of Hemophilia.pdf
• HealthAtoZ.com
  • Hemophilia
  • Von Willebrand disease
• Kids Health
  • Hemophilia
  • von Willebrand Disease
• Medline Plus Medical Encyclopedia
  • Hemophilia
  • Von Willebrand disease
• National Health, Lung and Blood Institute
  • What Is Hemophilia?
  • What Is von Willebrand Disease?
• Peace Health
  • Hemophilia
  • Von Willebrand's Disease
• WebMD
  • Hemophilia-Topic Overview
  • Von Willebrand's Disease-Topic Overview
• Merck Manual Home Edition
  • Hemophilia: Bleeding and Clotting Disorders
  • Von Willebrand's Disease: Bleeding and Clotting Disorders
• Genetics Home Reference: a guide to genetic disorders
  • Hemophilia
  • Von Willebrand factor
• Hemophilia by More Focus Group
  • Hemophilia: Symptoms, Treatment, Complications and Types
  • The Future of Hemophilia Treatment may be Gene Therapy
  • Hemophilia: Blood Disorders Forum
• Hemophilia: What is it? from the Your Genes Your Health website
• Hemophilia: from Intelhealth from Aetna
• von Willebrand Disease article from Online Mendalian Inheritance in Man from NCBI
• National Institute of Allergy and Infectious Diseases
• US Food and Drug Administration
  • Food and Drug Administration Home Page
  • Recent FDA Recalls

National Organizations Dedicated to Bleeding Disorders

• National Hemophilia Foundation
  • What is a Bleeding Disorder?
  • Hemophilia A (Factor VIII Deficiency)
  • Hemophilia B (Factor IX)
  • von Willebrand disease
  • What are clotting disorders?
  • First Step program for parents of infants and youth with a prevention focus
  • HANDI - 1-800-42-HANDI - Nationwide Toll Free information Service of the National Hemophilia Foundation. Accessible Monday through Friday from 9 am to 6 pm EST or send them an email at handi@hemophilia.org. Requests can also be faxed to (212) 328-3799.
  • Florida Hemophilia Association -The Florida Affiliate of NHF
• Project Red Flag - Women's Bleeding Disorders - von Willebrand Disease sponsored by NHF
  • Project Red Flag Online Discussion Forum
• Canadian Hemophilia Society
• World Federation of Hemophilia
• International Society on Thrombosis and Haemostasis
• The National Alliance for Thrombosis & Thrombophilia
• American Society of Hematology
• Cooley's Anemia Foundation leading the fight against Thalassemia
• The Coalition for Hemophilia B, Inc.
• Through the Looking Glass Scholarships for Children with Disabilities
• Bleeding Disorders Legal Hotline - call Toll Free 1-800-520-6154- Funded by a Grant from Baxter and Endorsed by the National Hemophilia Foundation

Information on Bleeding Disorders from Children's Hospitals

• Hemophilia site from University of California San Francisco Children's Hospital
• Hemophilia - My Child Has Hemophilia from Children's Hospital Boston
• Hemophilia from Virtual Pediatric Hospital

Drug Company and Home Health  Care Company Websites on Bleeding Disorders

• AHF Hemophilia homecare and other inherited bleeding disorder programs

• All About Bleeding: Your online von Willebrand Disease resource from CSL Behring

• Hemophilia Galaxy | Your Hemophilia Information Resource from Baxter Healthcare

• Hemophilia with Inhibitors from NovoNordisk

• Hemophilia Health Services

• Hemophilia Home Care  - Matrix Health Group

• Hemophilia Moms from CSL Behring

• Hemophilia Options

• Hemophilia Village  support site from Wyeth

• Living with Hemophilia site from Bayer HealthCare

• Bleeding Disorders Legal Hotline - call Toll Free 1-800-520-6154 - Funded by a Grant from Baxter and Endorsed by the National Hemophilia Foundation

Online Support Groups Related to Bleeding Disorders

• Hemophilia : International Hemophilia Club
• parentspeoplehemophilia : For people dealing with Hemophilia etc. an online community of support
• Bleeding-Disorders : Hemophilia, Bleeding Disorders, VWD Yahoo Health Groups for online support
• Factor9 : HemophiliaB Yahoo Health Group dedicated to Hemophilia B
• Hemophilia News - Topix News on Hemophilia continually updated from thousands of sources around the net
• LivingWithHemophilia.org - Blog
• Mothers United Mission for Sons
• Project Red Flag Online Discussion Forum

Parent Education Presentation: Raising a Child with a Bleeding Disorder

• PowerPoint: Raising a Child with a Bleeding Disorder

• PowerPoint: Criar a un niño con un trastorno de la Sangre

   

Coping.org is a Public Service of James J. Messina, Ph.D. & Constance M. Messina, Ph.D.,  Email: jjmess@tampabay.rr.com  ©1999-2007 James J. Messina, Ph.D. & Constance Messina, Ph.D.  Note: Original materials on this site may be reproduced for your personal, educational, or noncommercial use as long as you credit the authors and website.