National Bleeding Disorders Foundation

What it reported doing in 2024

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 at

Financial Efficiency

• Mission deployment rate: 93.9%; rating input score 94
• Program expense ratio: 74.4%; rating input score 74
• Fundraising efficiency: $10.09 raised per $1 spent on fundraising; rating input score 38; 38th percentile among comparable filings

Transparency & Controls

• Consistency checks: 94.4%; rating input score 94; 22nd percentile among comparable filings
• Pay-setting controls: 4 of 6 controls in place; rating input score 67
  • Compensation committee: Pass
  • Independent consultant: Pass
  • Other Form 990s reviewed: Missing
  • Written employment contract: Missing
  • Compensation survey or study: Pass
  • Board or committee approval: Pass
• Foreign activity oversight: 0 of 8 controls in place; rating input score 0
  • Claims monitoring procedures: Fail
  • Requires narrative reports: Fail
  • Conducts field audits: Fail
  • May suspend future funding: Fail
  • Requires financial reports: Fail
  • Conducts site visits: Fail
  • Requires grant agreements: Fail
  • May require repayment: Fail
• Grant itemization coverage: 42.2%; rating input score 42; 10th percentile among comparable filings
• Major donor itemization: Yes; rating input score 100
• Related-party transparency: Limited

Accountability

• Independent voting board: 100%; rating input score 100; 66th percentile among comparable filings
• Governance controls: 9 of 9 controls in place; rating input score 100
  • Conflict-of-interest policy: Pass
  • Whistleblower policy: Pass
  • Document-retention policy: Pass
  • CEO compensation review process: Pass
  • Other executive compensation review process: Pass
  • Form 990 shared with the board: Pass
  • Board meeting minutes documented: Pass
  • Audit committee oversight: Pass
  • Independent financial-statement audit: Pass

Sustainability

• Operating margin: -18.6%; rating input score 5; 5th percentile among comparable filings
• Total-asset coverage ratio: 1.57; rating input score 53; 53rd percentile among comparable filings
• Liabilities to assets ratio: 0.11; rating input score 72; 72nd percentile among comparable filings
• Officer compensation ratio: 14%; rating input score 10; 10th percentile among comparable filings

Growth

• Program expense growth: 2% per year; rating input score 100; 20th percentile among comparable filings
• Revenue growth: 3.2% per year; rating input score 100; 27th percentile among comparable filings
• Asset growth: 7.6% per year; rating input score 100; 52nd percentile among comparable filings