Utah Hemophilia Foundation

What it reported doing in 2024

Community education: camp valor - 48 campers attended. For the children in Utah's bleeding disorders community, camp valor represents the foundation for effective life-long management of a bleeding disorder. It is at this camp that children first learn to self-infuse. Campers, also, learn the basics of self-care required for the treatment and management of their disease state. Because of the severity of the condition from which they suffer, children with hemophilia seldom have the opportunity to enjoy many of the same physical activities that their unaffected peers do. Camp valor, allows children with bleeding disorders to spend time outdoors, recreating under the constant care and supervision of a full complement of medical professionals. For most of these children, it is the only time that they can just be kids. Everybody's here - 120 people attended. A program that brings together the uhf, industry partners, the hemophilia treatment center staff, and the bleeding disorders community. It is an evening of networking, information, and peer support. Informational exhibits are provided by pharmaceutical manufacturers and home care companies, which disseminate the latest information on the management and care of bleeding disorders. Community members are able to associate and learn from one another's shared experiences. Family fest & resource fair - 224 people attended. Pharmaceutical manufacturers and home care company representatives exhibit with information about the latest tools & techniques in managing bleeding disorders. Available information includes: latest treatments and medications, insurance co-payment assistance programs, home health services, uhf program services and resources, and more. Females & bleeding disorders (fab) conference - 56 people attended. Just for women in the bleeding disorders community, ages 12 and older, including those with von willebrand disease, carriers, moms of affected children, wives of affected men, and caregivers. Participants enjoy workshops and information specifically focused on the unique issues associated with women and bleeding disorders. Teen support group - 55 teens attended. Activities for teens with bleeding disorders and their siblings, ages 13- 19 that includes interactive education workshops, discussion groups, and recreational activities. Miscellaneous support groups - 152 people attended. Provides an opportunity for people with bleeding disorders to interact and learn from others in the group.

Financial Efficiency

• Mission deployment rate: 85.3%; rating input score 85
• Program expense ratio: 90.2%; rating input score 90
• Fundraising efficiency: $21.67 raised per $1 spent on fundraising; rating input score 60; 60th percentile among comparable filings

Transparency & Controls

• Consistency checks: 100%; rating input score 100; 64th percentile among comparable filings
• Pay-setting controls: Limited
• Foreign activity oversight: Limited
• Grant itemization coverage: Limited
• Major donor itemization: Yes; rating input score 100
• Related-party transparency: Limited

Accountability

• Independent voting board: 100%; rating input score 100; 63rd percentile among comparable filings
• Governance controls: 3 of 8 controls in place; rating input score 38
  • Conflict-of-interest policy: Pass
  • Whistleblower policy: Fail
  • Document-retention policy: Fail
  • CEO compensation review process: NotApplicable
  • Other executive compensation review process: Fail
  • Form 990 shared with the board: Pass
  • Board meeting minutes documented: Pass
  • Audit committee oversight: Missing
  • Independent financial-statement audit: Fail

Sustainability

• Operating margin: 7.1%; rating input score 55; 55th percentile among comparable filings
• Total-asset coverage ratio: 3; rating input score 69; 69th percentile among comparable filings
• Liabilities to assets ratio: 0; rating input score 80; 80th percentile among comparable filings
• Officer compensation ratio: 19.7%; rating input score 20; 20th percentile among comparable filings

Growth

• Program expense growth: 0.3% per year; rating input score 100; 32nd percentile among comparable filings
• Revenue growth: 0.3% per year; rating input score 100; 25th percentile among comparable filings
• Asset growth: 8.3% per year; rating input score 100; 60th percentile among comparable filings