United Porphyrias Association Inc

What it reported doing in 2024

Patient Programs/EducationUPA ensures that the voice of the patient is at the center of this advocacy organization, representing each type of porphyria. Our primary and significant goal is to engage the patient community and enable patients, advocates, and families to join United Porphyrias through a Sign UP form available on our website. Though patients do not have to join in order to receive the most up-to- date information and to access our services, it will be the avenue for ongoing engagement. UPA is the primary source of information in the United States regarding the porphyrias. Programming UPA is focused on educational programming and activities that advance awareness, research, and treatment of the porphyrias. UPA will focus on curating our significant database of patients, caregivers, and advocates. This serves as an avenue to share important news and updates, to promote research opportunities, to engage in education and awareness events, and to enhance the patient experience through targeted messaging to various patient populations. Outreach: UPA develops patient community connection opportunities that will meet the needs of the varied demographics of our patient population. A primary goal continues to be to create smaller group, or regional, connections. Establishing these resources as arms of the UPA has supported extending our reach, especially when we launch efforts including meetings, studies, and new and ongoing research. We have branded our meetings Connect UP. UPA Connect UP is a secure community form that allows patient connections that are hosted, maintained, and moderated by our staff and trained volunteers. The goal of this effort is to allow for supportive connections that are not housed on social media. This allows for extended conversations for patients, and potentially physicians, who are not comfortable communicating via social media. Patient Education Meetings: UPA has held monthly patient education gatherings inclusive of each of the porphyrias. We will continue to engage the patient community in this way, using our expert physicians as webinar expert resources. We seek to do one per month over each year. Patient Navigation: The leadership and staff of the UPA are constantly fielding patient and physician inquiries via phone, email, website contact forms and social media. We educate on the diagnosis, management and treatment of porphyria based on the research and publications of the UPA Scientific Advisory Board and International Porphyria experts. We also guide access to research, porphyria centers, and local treatment. At no time do we ever offer medical guidance, diagnose patients, or interpret medical lab results. Porphyria Patient Day 2024 UPA collaborates with the US experts through both the Porphyrias Consortium and the American Porphyrias Expert Collaborative to organize and host a biennial International Porphyrias Symposium, inclusive of a scientific conference and patient day, that focused on most up-to-date information on the porphyrias and heme biosynthesis as well as new and emerging research that impact porphyria. Summer Camp Phototoxic diseases UPA will hosted a summer camp long weekend in 2024. Our team, in coordination with Shadow Jumpers, has developed a list of potential camp locations and will finalize a plan and launch registration in early 2024. Prior options for a family camp in this community are no longer functioning it is an unmet need for our youth and adult communities. Growth/Database (global capture patients) Global capture of the patient network has not been thoroughly leveraged. UPA is in a unique position to engage in the US and globally to expand our database of patients and will continue to be a focus.Mental/Emotional Health Support Evidence supports the concept that patients experience a mental health impact due to the nature of the disease. However, there are no existing resources that combat this community crisis. UPA develops resources to combat the emotional

Financial Efficiency

• Mission deployment rate: 24.5%; rating input score 25
• Program expense ratio: 41.5%; rating input score 42
• Fundraising efficiency: Limited

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: 28.6%; rating input score 29; 15th percentile among comparable filings
• Governance controls: 0 of 8 controls in place; rating input score 0
  • Conflict-of-interest policy: Fail
  • Whistleblower policy: Fail
  • Document-retention policy: Fail
  • CEO compensation review process: Fail
  • Other executive compensation review process: NotApplicable
  • Form 990 shared with the board: Fail
  • Board meeting minutes documented: Fail
  • Audit committee oversight: Missing
  • Independent financial-statement audit: Fail

Sustainability

• Operating margin: 44.4%; rating input score 90; 90th percentile among comparable filings
• Total-asset coverage ratio: 4.58; rating input score 77; 77th percentile among comparable filings
• Liabilities to assets ratio: 0; rating input score 53; 53rd percentile among comparable filings
• Officer compensation ratio: 29.1%; rating input score 12; 12th percentile among comparable filings

Growth

• Program expense growth: 33.8% per year; rating input score 100; 92nd percentile among comparable filings
• Revenue growth: -13.5% per year; rating input score 0; 4th percentile among comparable filings
• Asset growth: 35.8% per year; rating input score 100; 94th percentile among comparable filings