Here you will find a few helpful links...shown in alphabetical order.
Bleeding Disorder Foundation of Washington
www.bdfwa.org
Note: There are bleeding disorder foundations located all over the world. Contact your local Hemophilia Treatment Center (HTC) to find the one nearest you.
Volunteer, nonprofit service organization dedicated to improving the quality of life of families affected by bleeding disorders and complications of those disorders, such as HIV/AIDS and hepatitis.
Centers for Disease Control and Prevention
www.cdc.gov
The CDC supports a network of specialized healthcare centers to prevent and reduce complications experienced by people with blood disorders. Currently, the network consists of approximately 140 hemophilia treatment centers (HTCs), eight hemostasis and thrombosis centers, and six thalassemia care centers. CDC is working to increase the number of centers.
For helpful information, search the CDC website for Hemophilia Treatment Center and Women.
Hemaware - The Bleeding Disorders Magazine
http://www.hemaware.org/women
Supported by the National Hemophilia Foundation, there are many topics that are covered. Get answers on how bleeding disorders, including von Willebrand disease, affect women and girls.
A Family Matter - article of a family with Factor V deficiency
Factor V Deficiency - rare bleeding disorder has no factor concentrate
Hemophilia Federation of America (HFA)
www.hemophiliafed.org
Nonprofit organization, incorporated in 1994, addresses the evolving needs of the bleeding disorder community.
Humate-P® for Von Willebrand Disease
http://www.humate-p.com/
Humate-P® is a von Willebrand factor replacement therapy with over 20 years of demonstrated safety and efficacy.Information provided from CSL Behring.
LadyBugs Foundation
A Foundation Serving Women With Bleeding Disorders
LA Kelley Communications, Inc.
www.kelleycom.com
Provides educational tools for people and families living with hemophilia and for the for-profit and nonprofit organizations that serve them. The Parent Empowerment Newsletter (PEN) and other valuable educational tools can be sent to you free of charge, just for the asking.
MyGirlsBlood
Facebook Group: MyGirlsBlood
Website: www.MyGirlsBlood.org
Nonprofit 501 (c) (3) charity organization and international social network.
National Hemophilia Foundation (NHF)
www.hemophilia.org
Nonprofit organization dedicated to finding better treatments and cures for bleeding and clotting disorders. Sponsors Project Red Flag.
Victory for Women
http://www.hemophilia.org/NHFWeb/MainPgs/MainNHF.aspx?menuid=314&contentid=1564&rptname=women
Victory for Women (V4W) is NHF’s health initiative to address the critical issues faced by women with bleeding disorders. V4W has two main goals:
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to increase awareness of women’s bleeding disorders so that girls and women receive early, accurate diagnoses, leading to better health outcomes and
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to provide women affected by bleeding disorders with the education, support, skills and resources they need to advocate for their healthcare, financial and social support needs.
Puget Sound Blood Center Hemophilia Treatment Center
http://www.psbc.org/patient/hemophilia.htm
Hemophilia Care Program of PSBC helps people with hemophilia obtain early, effective treatment and acquire skills that foster independence and minimize the acute and chronic complications of hemophilia.
Project SHARE
www.kelleycom.com
Humanitarian program devoted to donating factor concentrates to the bleeding disorder community in developing countries.
Save One Life
www.saveonelife.net
Nonprofit international organization offers individuals, families, companies, and/or organizations the opportunity, for a small monthly gift, to sponsor a child or adult with a bleeding disorder in a developing country.
World Federation of Hemophilia (WFH)
www.wfh.org
International nonprofit organization established in 1963 to improve treatment and care for people with hemophilia and other inherited bleeding disorders worldwide.
World Federation of Hemophilia USA
www.wfhusa.org
Affiliated organization of the WFH. Susan Skinner Memorial Fund scholarships support young women with bleeding disorders worldwide.
World Health Organization (WHO)
www.who.int
Directing and coordinating authority for health within the United Nations system.
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