$5.5M in expenses

Health education and trainingnbdf expanded its health coaching project, own your path, for men and women with hemophilia or von willebrand disease (VWD). The program aims to improve treatment adherence. NBDF also continues to distribute all of its educational publications for those living with inheritable bleeding disorders, from masac for you new publications on diagnosis, treatment and care for women and girls, to NBDF's new thrive campaign showcasing 6 easy steps to living healthy with a bleeding disorder. In 2024, NBDF distributed 30,777 publications.the primary goals of the national bleeding disorders foundation's (NBDF's) victory for women and better you know programs are: 1) improve the awareness of symptoms of bleeding disorders in women to increase diagnosis long term; and 2) to provide affected women with education and support. In 2024 NBDF reached out to 26 community partners to share about signs and symptoms of bleeding disorders. In addition, close to 2,000 women took the better you know risk assessment tool, 76% had symptoms of a bleeding disorder, and over 7,600 visited victoryforwomen.org.steps for living (SFL) is a multimedia educational program designed to increase access to age and culturally appropriate information that can help in the management of daily challenges of living with a bleeding disorder. NBDF launched the redesigned and rewritten SFL website in english and spanish in july 2024 leading to over 60,000 views in 2024.NBDF's education for empowerment program brings workshops out to local chapter and HTC events. NBDF facilitated 89 workshops in english and spanish, with over 1200 participants in 2024. Of this program, 86% learned something new from the sessions, and 84% planned to implement the new learnings or skills.NBDF has designed the national youth leadership institute (nyli) to assist young people from the bleeding disorders community to become well-trained, recognized leaders. NBDF provides young adults with training, support and opportunities to provide education to the bleeding disorders community. In 2024, NBDF provided trainings to the 7 members of nyli on topics including public speaking, advocacy, non-profit management and fundraising. NBDF developed numerous educational components to its innovative therapies programming to ensure that community members are aware of the latest treatments in the pipeline and how to have conversations with their healthcare providers for the best treatment decisions. In 2024 NBDF expanded its 3d video series on the clotting cascade with new videos on factor replacement therapy and bispecific antibody therapy, both in english and spanish. There are over 100,000 views across all the series videos combined since they launched.at NBDF's 76th bleeding disorders conference (BDC), held september 12-14, 2024, at the world congress convention center in atlanta, georgia NBDF delivered 64 consumer track educational sessions, as well as 4 networking hours for connections and support. Of those who attended, 87% reported learning something new and 84% said they would implement those new learnings or skills. NBDF also offered 55 hours of live in-person training for health care providers in four concurrent educational tracks. Continuing education credits were made available to eight distinct licensed healthcare disciplines as follows: - physicians/other prescribers MD/do physicians; physician assistants; nurse practitioners - (a maximum of 8.75 ama pra category 1 credits) - pharmacists - (for 8.75 contact hours (0.875 ceus) of the accreditation council for pharmacy education (acpe) - registered nurses and nurse practitioners (a maximum of 12.5 ancc accredited nursing continuing professional development contact hours ) - medical and clinical social workers [12.50 clinical/ethics aswb-ace approved continuing education credits (up to 11.0 clinical and 1.5 ethics)] - physical therapists and physical therapy assistants (up to 12.5 PT ceus, state dependent)1,810 individuals attended our 2024 bleeding disorders conference overall, which includes a total of 326 health care providers (of which, 245 providers were issued cme/ce certificates for their successful participation). Handi, NBDF's information resource center (renamed to the neil frick resource center in the beginning of 2025), provided customized responses to 1,082 phone or e-mail information requests about bleeding or other rare disorders in 2024. Handi wrote 54 medical news stories and journal article summaries that were posted on the NBDF website. Handi highlights, a new informational flyer providing digital links to internal and external resources in key areas for parents/caregivers, individuals living with an inheritable bleeding disorder and healthcare providers was made available on NBDF's website. A total of nine "handi highlights" were posted in 2024 in the subject areas of: introductory education resources, pain management, novel technologies and advances in treatment, caregiving, mental health, back to school, joint health, students off to college, women and girls living with bleeding disorders. Handi also awarded the 2024 kevin child scholarship to a qualified student from bigfork, montana. NBDF's medical and scientific advisory council (masac) issued nine (new or updated) documents in 2024:masac document 291 - physical therapy management for bone health in people with bleeding disordersmasac document 290 - masac recommendations concerning products licensed for the treatment of hemophilia and selected disorders of the coagulation system masac document 289 - recommendations on increasing access to mental health and substance use disorder treatment facilities and programs for persons with bleeding disorders masac document 288 - masac resolution on proposed hemophilia treatment guidelines from the international society on thrombosis and haemostasis (isth) masac document 287 - resolution on the world health organization essential medicine list masac document 286 - masac recommendations regarding diagnosis and management of inherited bleeding disorders in girls and women with personal and family history of bleeding masac document 285 - masac recommendation regarding the need for bleeding disorders gene therapy lexicon developmentmasac document 284 - masac recommendations concerning products licensed for the treatment of hemophilia and selected disorders of the coagulation system masac document 283 - physical therapy management for people with bleeding disorders and chronic pain

$4.2M in expenses

Community services NBDF's public policy department works to advocate for policies that promote health, safety, rights and access to care for people with inheritable blood disorders by educating federal and state lawmakers, other government agencies and officials, as well as industry and allied health education and training organizations. Two key areas of focus are payer and consumer education, and self-advocacy.the public policy department provides training, tools, and hands-on support to consumers to help them become effective self-advocates.through the state-based advocacy program, NBDF awards grants to chapters, competitively, to support their advocacy efforts. Successful grant recipients are required to attend several virtual or in-person training events annually, hold regular advocacy committee meetings, include NBDF staff in state advocacy events, provide a midyear progress report, collect, submit specified program metrics quarterly, host a stakeholder planning meeting and submit a final report at year's end. This program is named the state based advocacy coalition (sbac) program. Grants are issued on an annual basis, with chapters applying each december. All chapters are eligible to apply for financial and programmatic support.members of the inheritable blood disorders community throughout the country are encouraged to participate in NBDF's annual washington days program, which is a grassroots advocacy event that brings patients and their families to washington, DC to meet with their members of congress and educate them about the disorders impacting the community. This event took place in early march. Consumers are also encouraged to attend state advocacy days at their local state capital. NBDF also provides educational opportunities for payers to help them better understand the unique healthcare needs of those affected by blood disorders, including live presentations, webinars, online educational modules, and a joint collaborative bringing together payers, medical providers and patients. NBDF hosts about 25-30 state advocacy days per year.

$3.3M in expenses

Researchnational research blueprint (NRB): a communitywide project to redefine the way research in the bleeding disorders community was launched in 2019. The goals of the national research blueprint (NRB) are: (1) develop a multidisciplinary integrated research enterprise centered in a network of both specialty and community-based care; driven by patients with inherited bleeding disorders (pwibd) as lived experience experts (lees); embedded in the principles of social justice; to steadily advance the standard of care for pwibds through impactful basic, translational, clinical, health outcomes, and implementation research, advocacy and education; (2) expand the national research infrastructure to support the envisioned research enterprise through facilitation collaboration and inclusion, and (3) reinvigorate a sustainable workforce across comprehensive care and scientific disciplines that incorporates the lee perspective to advance health through the seamless integration of care and research as well as active community engagement to foster a research culture. In 2024, NBDF convened key stakeholders in a NRB summit to present the framework as defined by all working groups. As a result, five manuscripts describing the process are in progress, with an estimated submission date during the summer of 2025. The research team presented in numerous speaking engagements nationally to create awareness and establish partnerships. Community voices in research (CVR): CVR is a community-powered registry intended to capture the experience of living with a bleeding disorder directly from those affected and their immediate relatives. It provides an intimate look of the lived experience and aims to understand and improve key aspects of health-related quality of life (qol), identify research questions important to community members, and provide vetted resources and other research opportunities to participants. An improved version of the registry was launched in september of 2023. Numerous presentations and abstracts were presented and a manuscript detailing its development was published in a peer reviewed journal.2024 CVR highlights: - NBDF has a multiprong comprehensive enrollment plan. Current enrollment is over 1,000 participants. - the enrollment, baseline survey and participant dashboard are now in both english and spanish. Virtual advisory panels (vaps) and in person advisory panels (paps): vaps and paps are virtual and in-person focus groups. Four vaps were facilitated in 2024. A total of 24 advisors participated. Information gathered provided patient/caregiver insights on educational resources, health literacy, clinical trial design, identifying disparities and gaps in care. Research journal club: the virtual research journal club was open to the community, researchers, clinicians, and chapters. In 2024 NBDF held two sessions.2024 NBDF research grants awards: judith graham pool postdoctoral research (JGP) - DR. Huong chau at stanford: elucidating innate immune response to factor ix through hemophilia b mouse model - DR. Marissa brake, beth israel medical center: the role of tissue factor in blood coagulation activation and bleeding risk in mice and humanscareer development award: (cda) funded by sanofi - DR. Bhavya doshi- chop transferring to emory 2025: unraveling the cytokine and cellular immune responses underlying fviii immunogenicityexcellence awards for nursing, social work, & physical therapy: - nursing: louise baca/maine health: outreach in rural maine: identifying new patients and establishing satellite sites. - physical therapy: john deloach/ u of florida: assessing effects of exercise on vascular access, trypanophobia, and knesiophobia in hemophilia patients. - social work: kyelin cook/intermountain healthcare foundation: (contracting pending) addressing gaps in care among menstruating individuals in utahnbdf-takeda clinical fellow DR. Callie berkowitz, MD, university of north carolina at chapel hill was selected to receive mentored-training in 2024-2026corehem mental health tool: developed through an initiative co-led by NBDF, corehem mental health outlook questionnaire (corehem-mho) is a patient-reported outcome measurement (prom) instrument that assesses mental health outlook (including psychological status and emotional functioning) associated with receiving gene therapy or any durable treatment for hemophilia. The corehem-mho instrument is owned by NBDF and available for use in research and within clinical trial settings through a license agreement. The project has 12 peer-reviewed publications to date and has been presented at tens of national and international medical conferences. We are currently collaborating with 4 partners who are using the tool in clinical trials and practice.

$1.6M in expenses

Chapter services NBDF's chapter services department provides community support by helping its 52 member chapters offer education, training, resources and referrals to affected members of the bleeding disorders community in the areas that each chapter serves. Chapter services offers the member chapters financial support in the form of grants and covers some travel expenses to support education and advocacy meetings. Department staff members coach chapter leaders on how to create, execute and evaluate programs and services designed for their affected constituents as well as ongoing coaching and support on financial sustainability, processes and procedures for best nonprofit practice. In 2024, chapter services offered 23 educational webinar series sessions, held one 4-day in-person national leadership seminar offering training, and offered a full "chapter training track" at NBDF's annual bleeding disorders conference. These education offerings focus on diversification of funding strategies, health equity and inclusion, board development and building. Additionally, the unite for bleeding disorders walk (peer-to-peer fundraising campaign), overseen and provided by the chapter services department, empowered 5,696 participants to raise a collective $1.9m for their local chapters.