Maryland · Nonprofit
UNITED PORPHYRIAS ASSOCIATION INC
UNITED PORPHYRIAS ASSOCIATION INC (Maryland) receives grants from 6 organizations whose IRS filings report $890,915 to it, the largest being Silicon Valley Community Foundation ($800,000). 3 of them have funded it in more than one year, and 96% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- Revenue FY2024
- $752k
- Funders on record
- 6
- Grants received
- $891k
- Net assets
- $962k
What United Porphyrias Association Inc does
Mission
The United Porphyrias Association is committed to improving the quality of life of the porphyria patient community and is relentlessly focused on advancing disease awareness, research, and therapies in all the porphyrias.
As stated on its FY2024 Form 990.
Programs
ConferencesThe United Porphyrias Association, as a prominent patient advocacy group, plays an essential role in participating and exhibiting at various conferences globally. This involvement is vital for educating physicians who diagnose, manage, and treat porphyrias, thereby raising awareness about this group of rare disorders and providing valuable information to healthcare professionals.The year begins with the association's attendance at the American Academy of Dermatology Annual Meeting in San Diego, California, a significant event for discussing the skin manifestations associated with some porphyrias. Around the same time, they also participate in the Annual Psychodermatology Meeting, focusing on the psychological aspects of skin diseases, including those related to porphyrias.Simultaneously, the association engages at the Coalition of Skin Diseases Annual Meeting and Development Day, also in San Diego, which emphasizes collaborative efforts to improve skin disease outcomes. Soon after, they join the Annual Clinical Genetics Meeting in Toronto, Canada, providing insights into the genetic underpinnings of porphyrias and highlighting the importance of genetic counseling and…
$74,734 spent71% of program spendingPatient 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…
$31,166 spent29% of program spendingScientific Advisory Board EngagementEnhancing Patient Knowledge and Support Through Expert CollaborationThe United Porphyrias Association (UPA) is deeply committed to enhancing the knowledge and management of porphyria and other rare diseases within the patient community. Our Scientific Advisory Board plays a pivotal role in this endeavor. Comprising leading experts in the field, the board is responsible for gathering and disseminating critical information about disease management and emerging research that could significantly impact patient care and treatment strategies.Engagement and Education of Healthcare ProfessionalsRecognizing the importance of informed and up-to-date healthcare providers in the diagnosis and treatment of rare diseases, the UPA has developed a specialized segment on our website dedicated to healthcare professionals. This resource provides comprehensive and current diagnostic, management, and treatment information to physicians both in the U.S. and internationally. As new research and guidelines emerge, we continuously update this segment to ensure that treating physicians have access to the latest information.Moreover, the UPA actively seeks training…
The 3 programs described on its FY2024 Form 990, listed largest first by expense. Program spending in total: $105,900.
The organization over time
Each line starts at 100 in 2023, so what you read is the shape rather than the size: 150 means half as much again as 2023, 50 means half. The number beside each label in the key is where it ended. The shaded band is where the middle 50% of its peers' revenue would sit, given their growth.
Balance sheet
Total assets and total liabilities at each year end, in dollars. The largest one-year move in total assets was 2023 to 2024, from $531k to $972k (+83%).
How it's funded, over time
Each bar is one year's revenue split into where it came from, and every bar is the same height — these are shares, not amounts, so a year that raised twice as much looks the same size. Hover a bar for the split.
99% of UNITED PORPHYRIAS ASSOCIATION INC’s revenue is contributions — more donation-reliant than the typical peer (82% for the typical peer).
Surplus & reserves
Operating surplus or deficit each year, and months of liquidity in hand. 0 of the last 2 reported years ran a deficit.
reserve
Leadership and staff
The officers, directors, trustees and key employees listed on each return. Joined and no longer listed compare each filing with the year before, matching people by surname and first initial; a year after a gap, or a roster under three people, has no comparison.
Board chair
Andrew L Turell
Chairman
As listed on its FY2024 Form 990.
Who funds it, year by year
2022 → 2023: the base broadened from 1 funder to 2 funders, grant income rose $10k → $35k.
3 of 6 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 96% of grant dollars received. That money is really individual donors directing a sponsor; the institutions to cultivate are the non-DAF funders.
From the IRS filings of UNITED PORPHYRIAS ASSOCIATION INC’s funders (the co-funder graph). Association, not causation. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How concentrated its funding is
UNITED PORPHYRIAS ASSOCIATION INC leans on a few funders — its largest provides 90% of grant income and the top three 99%; half comes from just 1 funder.
the vertical line marks half of all grant income — 1 funder to its left
96% of the income these shares are computed over arrives through pass-through sponsors or from payers whose filings do not say what kind of payment it is. Concentration is still measured over all of it, because the money is real; what it does not support is a claim about how many institutions have chosen to fund UNITED PORPHYRIAS ASSOCIATION INC.
Largest funder’s share by year: 2022 100% · 2023 71% — diversifying over time.
“Effective funders” = inverse Herfindahl index (1 / Σ shareᵢ²) — the number of equal-sized funders that would give the same concentration. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
Where its funders are
96% of UNITED PORPHYRIAS ASSOCIATION INC's grant income arrives through donor-advised or pass-through sponsors, whose addresses record where the money is held rather than where the donor is. Of the $33k that is directly attributable, 100% of it comes from funders outside Maryland, across 2 states.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $858k arriving through sponsors registered in 3 states is excluded from the map and the split above: a sponsor holds money on a donor’s behalf, so its registered address would place those dollars somewhere no donor need ever have been. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
Against its field
UNITED PORPHYRIAS ASSOCIATION INC runs a healthier operating margin than three-quarters of the 13,754 health nonprofits its size.
this organization peer median middle 50% of peers· 13,754 health nonprofits $100k–$1M, FY2024
Organizations like UNITED PORPHYRIAS ASSOCIATION INC
Organizations whose mission and program text most resemble this one, by semantic similarity over every organization in the US filings — the closest peers, and often the clearest route to shared or prospective funders.
In Maryland
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Where the money goes
44% of spending goes to programs.
Governance
Public support
0%
Share of support from the public (Schedule A) — the basis for its public-charity status.
Footprint & structure
Part of a family of 1 related entity
- The American Porphyrias Expert Collabora · exempt
Screen this organization
A dated, signed PDF of the compliance screen for UNITED PORPHYRIAS ASSOCIATION INC: IRS status (Business Master File, Publication 78, auto-revocation), the OFAC sanctions lists, the Internal Revenue Bulletin, and California registration, with the Rev. Proc. 2018-32 §8.01 reliance elements stated element by element. Generated from the current files at the moment you download it.
Screens are triage, not determinations; a source that cannot be read reports not screened, never clear. Screen this nonprofit · How the screen works · on the API as GET /api/screening/{ein}?format=pdf
Questions and answers
- Who funds UNITED PORPHYRIAS ASSOCIATION INC?
- UNITED PORPHYRIAS ASSOCIATION INC (Maryland) receives grants from 6 organizations whose IRS filings report $890,915 to it, the largest being Silicon Valley Community Foundation ($800,000). 3 of them have funded it in more than one year, and 96% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- How many funders does UNITED PORPHYRIAS ASSOCIATION INC have?
- IRS filings report 6 organizations giving $890,915 in grants to UNITED PORPHYRIAS ASSOCIATION INC, 3 of which have funded it in more than one year.
- Who is the largest funder of UNITED PORPHYRIAS ASSOCIATION INC?
- Silicon Valley Community Foundation is the largest funder on record, with $800,000 in grants. The full list of funders is on this page.
- How can an organization like UNITED PORPHYRIAS ASSOCIATION INC find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in Maryland. The funding by cause and by state pages list the largest funders for a given area and how to approach them.
Play a game about who funds United Porphyrias Association →
These figures are read directly from IRS Form 990 / 990-PF e-file XML: this organization’s own return for FY2024 (financials across 2023–2024), and the filings of 6 funders that report grants to it. “On record” means captured in the filings we have parsed — a funder that does not e-file, or whose grant detail is not itemized, will not appear. Filings run roughly 12–24 months behind. Trends on this page end at FY2023, the last fiscal year that has finished arriving; later years are shown and marked, and move no figure. Data on this page was exported October 14, 2026. What this page cannot tell you · view filing