Partners

Hemophilia Memorial at the National AIDS Memorial Grove in Golden Gate Park opened in September 2017

NHF in collaboration with ASH, ISTH, and WFH, publishes guidelines on the diagnosis and management of von Willebrand disease.

NHF and Hemophilia Federation of America (HFA) convened a Safety Summit in Washington, DC to discuss monitoring, educating and communicating issues around bleeding disorders product safety.

NHF announces it will partner with ASH, ISTH, and WFH to create clinical practice guidelines for the diagnosis and management of von Willebrand Disease (VWD).

As part of the Hemophilia Inhibitor Study (HIRS), CDC gene sequences and develops a comprehensive list (CDC Hemophilia A and Hemophilia B Mutation Project known as CHAMPS) of the thousands of gene variants (or differences) that have been reported to cause hemophilia.

Results from CDC’s Hemophilia Inhibitor Research Study (HIRS), a pilot surveillance project conducted at CDC from 2006–2009, are published in the Journal of Thrombosis and Haemostasis. The findings from this project led to a modified testing method for inhibitors (antibodies) to hemophilia factor-replacement treatment products.

CDC, along with the Health Resources and Services Administration, the National Institutes of Health, Hemophilia of Georgia, and the American Society of Hematology, hosts the first National Conference on Blood Disorders in Public Health in Atlanta, GA.

Results of a CDC survey of women with von Willebrand disease (VWD), published in Haemophilia, find that there is an average of 16 years between the onset of symptoms and diagnosis of a bleeding disorder, pointing to the need for timely referral by gynecologists and other providers to a Hemophilia Treatment Center (HTC) and specialty testing by trained lab personnel to ensure proper diagnosis and treatment.

An NHLBI-funded study showed that nucleic acid-amplification testing for HIV-1 and hepatitis C virus further safeguards the nation's blood supply.

The NHI received the NHF's Research and Scientific Achievement Award for its "medical leadership ... tremendous stimulation and support of research activities directly related to the study and treatment of hemophilia."

NHF joins PAN, the Patient Access Network.

To further gather and share information about health issues, medical complications, and causes of death that affect people with bleeding disorders, such as inhibitors, the UDC surveillance system is revised and expanded and renamed Community Counts.

The Division of Blood Disorders joins NCBDDD.

The National Center on Birth Defects and Developmental Disabilities (NCBDDD) was established in April 2001 as a result of The Children’s Health Act of 2000.

NHF becomes a member of the National Health Council.

The International Committee on Thrombosis and Haemostasis (ICHT) forms in 1964. This body, in turn, promotes the formation of the current International Society on Thrombosis and Haemostasis (ISTH).