Helpful Resources
Being diagnosed with a rare bleeding disorder can be very overwhelming and it can be hard to separate fact from fiction. Below is a comprehensive overview of reputable websites and resources that can help you find the answers and support you need.
American Thrombosis & Hemostasis Network
ATHN partners with hemophilia treatment centers (HTCs) to establish a safe and secure database of patient health information, enabling the scientific community to gain a better understanding of bleeding disorders. In addition, they offer a useful online tools to help patients record factor use and monitor bleeds, such as ATHNadvoy and Robust Health.
Centers for Disease Control and Prevention
The CDC is the national public health institute of the United States – its main goal is to protect public health and safety through the control and prevention of disease, injury, and disability. This agency provides some funding to Hemophilia Treatment Centers and offers state-of-the-art medical information on its website.
CDC Hemophilia Treatment Center Directory
This link provides a comprehensive directory of all federally funded Hemophilia Treatment Centers (HTCs) across the United States. It’s a very useful tool if traveling or moving to a new state and you want to transfer care to a new HTC.
The Coalition for Hemophilia B
This foundation strives to make quality of life the focal point of treatment for people with hemophilia B and their families through education, empowerment, advocacy, and outreach.
Hemophilia Federation of America
HFA is a community-based organization that serves people with bleeding disorders and their families in the U.S.A. HFA provides national and regional programs, services and advocacy through its local chapters, as well as an annual national Symposium.
The National Bleeding Disorders Foundation
Formerly known as the National Hemophilia Foundation, NBDF is dedicated to finding better treatments and cures for inheritable bleeding disorders and to preventing the complications of these disorders through education, advocacy and research. This website offers a wide range of educational links and resources, including free publications. In addition, NBDF hosts their national Bleeding Disorders Conference (the BDC) each year where community members can learn cutting edge new information about bleeding disorders and build supportive connections with others.
The New York State Bleeding Disorders Coalition
This is a partnership of not-for-profit organizations dedicated to public advocacy on behalf of people affected by bleeding disorders in New York State. The Coalition is dedicated to ensuring that people affected by bleeding disorders have access to quality health care, giving them the opportunity to live a full and active life. The Coalition hosts an annual “Albany Days” advocacy event for the regional bleeding disorders community to help raise awareness with elected officials at the state capital.
Steps for Living
This comprehensive, interactive website provides outstanding bleeding disorders education for all of life’s stages – created and overseen by the National Hemophilia Foundation.
The World Federation of Hemophilia
WFH serves the global bleeding disorders community by providing patient/provider education, outreach and advocacy. WFH provides a unique “Twinning” program which creates short-term collaborative partnerships between medical professionals in developing and developed countries, helping to globally improve care for all people with bleeding disorders, regardless of where they live.