The National Bleeding Disorders Foundation (NBDF) announced the official creation of Guam Chapter of the National Bleeding Disorders Foundation. NBDF is the nation's leading organization dedicated to education, advocacy, research, and community support for people affected by bleeding disorders including hemophilia, von Willebrand disease, and rare factor and platelet disorders. The new chapter is the result of years of collaboration with the local bleeding disorders community and Region IX of the Hemophilia Treatment Center Network to improve access to comprehensive care, patient education, and community support on the island.
Staff from NBDF have been working with the bleeding disorders community on Guam actively since 2023. “We met with about 43 members of the community on Guam in 2023 after we heard some concerns that they weren’t getting access to the type of treatment and care that the community needed,” said Kenneth McElderry, director of chapter development for NBDF, and part of the team working with the community on Guam. “The most important issue to them was getting access to comprehensive care. So our first step was making sure they could get access to hematologists, nurses, and physical therapists.”
TaniaMarie Mendiola-Sgambelluri, a community member, advocate, and parent of children affected by bleeding disorders, helped organize that early focus group and echoed the sentiment. “The biggest need for the community we heard is for a medical team that specializes in bleeding disorders and for the information to be out in the community on how access care.”
This was accomplished by enlisting the expertise of the Guam Comprehensive Hemophilia Care Program of the Guam Department of Health and Social Services (GDPHSS). Since 2023, they aligned efforts with the Health Resources and Services Administration (HRSA) Western States Regional Hemophilia Network, NBDF, and local volunteers to offer comprehensive multi-disciplinary hemophilia treatment center (HTC) clinics to families with hemophilia, von Willebrand, and other rare bleeding disorders.
Through coordination with these agencies, a rotating team of dedicated hematologists, nurses, and physical therapists now holds twice-yearly clinic days on the island.
The next step was to provide education and support for the families. “When we talked to the community, they said they wanted a chapter,” said Mendiola-Sgambelluri. “We heard their voice and began working to create a chapter that could provide education, support, and advocacy for people with bleeding disorders and their families on Guam.”
NBDF staff and local volunteers, including Mendiola-Sgambelluri, began planning education days, bringing the families together to share their experiences and access the educational programming that NBDF offers, with assistance from HRSA Western States medical providers and GCHC, NBDF began offering twice-yearly Education Days starting in the fall of 2023, which were held in conjunction with its clinic days. In May of 2026, NBDF held the first bleeding disorders family camp on the island, with 76 members of the bleeding disorders community attending. “We wanted events where families could come and learn about what a bleeding disorder is and how to manage it,” said Mendiola-Sgambelluri.
Officially called Guam Chapter, National Bleeding Disorders Foundation, the organization will provide local education, support, advocacy, and community-building programs while operating as part of NBDF's national chapter network. It joins the six NBDF national chapters: Colorado, Hawaii, Idaho, Nevada, Nebraska, and West Virginia, and will be run under NBDF’s regional model, with programs and events coordinated by NBDF staff.
The first events as an NBDF national chapter will take place the weekend of October 16th, beginning with a clinic day on Friday, and community education day on Saturday that will culminate with Guam’s first-ever Unite for Bleeding Disorders Walk.
“We want the bleeding disorders community in Guam to know that we are in it for the long haul,” said McElderry. “We’re going to make sure they are getting access to the level of care they deserve, the same level of education about available treatment options they deserve, and the community support they deserve.”
“For the past few years, NBDF has been such a great help to the families on Guam,” said Mendiola-Sgambelluri. “This chapter will benefit not only the patients now, but children and the generations to come. With what we’re building today, future generations will know more about their bleeding disorder and how to handle it in their daily lives.”
Learn more about the Guam chapter of NBDF at their website.
