NBDF Mission

The National Bleeding Disorders Foundation (formerly the National Hemophilia Foundation) is dedicated to finding cures for inheritable blood and bleeding disorders and to addressing and preventing the complications of these disorders through research, education, and advocacy enabling people and families to thrive.

The Chapter's Focus

The Guam Chapter of the National Bleeding Disorders Foundation provides education, support, and advocacy for the bleeding disorder community on Guam and surrounding islands.

Chapter History

By the mid-1990s, social workers in the Medical Social Services (MSS) section of Guam’s Department of Public Health and Social Services (DPHSS) were increasingly aware that families affected by bleeding disorders needed more assistance. This movement for better care got a boost after a single phone call.

One day in 1995, Judith Baker, DrPH, MHSA, regional coordinator of the Western States/Region IX Hemophilia Treatment Center Network, received an urgent call at her Southern California office. The Region IX network covers California, Hawaii, Nevada and the six United States’ Pacific island jurisdictions. With the commercial internet in its infancy, and communication by phone and fax generally spotty, real-time information regarding the Pacific jurisdictions was limited. But on this day the caller on the other end of Baker’s phone was in Guam, 6,100 miles off the California coast.

Baker’s office had just conducted a survey throughout the US Pacific jurisdictions (Guam, American Samoa, Belau, the Commonwealth of the Northern Mariana Islands, the Federated States of Micronesia and the Marshall Islands) to determine how many physicians had patients diagnosed with, or suspected of having, a bleeding disorder. “We found Guam had the largest number,” Baker says now.

That day in 1995 an MSS social worker, Roselie “Rose” Zabala, MSW, was calling to tell Baker that a young Guamanian boy had been flown to Hawaii for emergency treatment of a head bleed. “She said, ‘We need help, we don’t understand these disorders,’” Baker recalls. “And I said, ‘OK, I’ll send you an excellent nurse who just started the Hemophilia Foundation of Nevada, and who also has a bleeding disorder. She can educate patients, families and healthcare providers.’”

Following the call with Rose Zabala, Baker arranged for the late Renee Paper, RN, CCRN, to make the journey to Guam in 1996. “Renee went to Guam with three objectives: to educate families and clinicians, to see if they were interested in starting a local bleeding disorders foundation and, eventually, a hemophilia treatment center,” Baker says. Paper hit the ground running and helped the local community start the Hemophilia/Bleeding Disorders Foundation of Guam (HFOG), a nonprofit consumer information and advocacy agency.

About the National Bleeding Disorder Foundation

In August 2023, the National Bleeding Disorders Foundation announced its new name after 75 years as the National Hemophilia Foundation.

National Hemophilia Foundation was founded in 1948 by Robert and Betty Jane Henry, parents of a young boy with hemophilia. When their son, Lee, was born, the only treatment for hemophilia was blood transfusions. The life expectation for a person with hemophilia was around 24 years old. However, the Henrys were determined to do everything they could to make life better for their only son – including frequent blood transfusions from father to son.

The Henrys knew that there must be other families in the country like theirs, isolated by fear and frustrated by lack of research and treatment.  With no organization to support them, Robert Henry decided to create what he and these other families needed. In 1948, he founded what was then called the Hemophilia Foundation. In the ensuing years, he would build the organization into one that brought doctors and researchers together, and supported families who were struggling to keep their children healthy. In 1954, he established the foundation’s Medical Advisory Council (now Medical and Scientific Advisory Council) to issue treatment and research recommendations for people with hemophilia. All across the country, chapters of the began to spring up, created by parents of children with hemophilia, who worked to organize blood drives, raise money and awareness, and encourage doctors and researchers to search for a cure.

Today, the foundation serves people across the US with all bleeding disorders, including hemophilia, von Willebrand disease, rare factor deficiencies, and platelet disorders. We support a network of 50 chapters across the country. We have given more than 22 million dollars to bleeding disorders research.  We provide education and support to countless families with bleeding disorders, seek to find resources for undiagnosed women with bleeding disorders, and work tirelessly to protect access to healthcare on the state and local level. Each year, we also award the best and brightest in our community.

Robert and Betty Jane Henry founded the organization because they knew they could enact meaningful change by bringing families affected by bleeding disorders together. They wanted to ensure that people with bleeding disorders were heard by scientists and healthcare providers; legislators and government agencies. Decades later, we honor the legacy of the Henrys by ensuring the bleeding disorders community remains at the heart of everything we do.