South Dakota · Nonprofit
RARE BY DESIGN INC
RARE BY DESIGN INC (South Dakota) receives grants from 2 organizations whose IRS filings report $21,562 to it, the largest being SIOUX FALLS AREA COMMUNITY FOUNDATION INC ($21,500). 2 of them have funded it in more than one year, and 100% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- Revenue FY2025
- $112k
- Funders on record
- 2
- Grants received
- $22k
- Net assets
- $142k
What Rare by Design Inc does
Mission
Rare by Design's primary purpose is creating awareness, inclusion and representation for individuals with rare diseases and disabilities. We work to positively support this community and their families.
As stated on its FY2025 Form 990-EZ.
Programs
The Style Show: A Runway to Empower supports the efforts of Rare by Design by demonstrating what true diversity looks like in our community and giving voice to all through representation. 252 people attended this event, where we featured models of various abilities, ages, genders (LGBTQIA), races and diverse body types. The Style Show: A Runway to Empower is an evening to raise awareness and financial support for Rare by Design.
$61,974 spent85% of program spendingRefocus was an art exhibit featuring photography of individuals with visible disabilities. The core mission of Refocus was to bridge the gap between initial perceptions and the rich human experiences that lie beneath visible disabilities. People with visible disabilities often face immediate assumptions and judgments due to their conditions, a reality they cannot conceal. We challenged these preconceived notions through the powerful medium of photography, with the aim of telling unique stories, dismantling stigmas and challenging misconceptions. 150 people attended this exhibit over the course of a month.
$0 spent0% of program spendingDisability Awareness Month Billboard Campaign - Rare by Design aimed to break the stigma and create exposure through our 2025 "Inclusion Is Always In" billboard campaign, utilizing visual representation. We used the billboard campaign to shine a light on the progress we have made since the signing of the American's with Disabilities Act, and normalize a future where all individuals with disabilities and rare diseases are seen, heard and valued. This billboard campaign had an estimated 186,000 impressions.
$5,263 spent7% of program spendingThe Film Festival was a local film festival ran by people with disabilities for people with disabilities. We sought films from all over the world to showcase the talents of people with physical and developmental disabilities and tell their stories. For films to have a chance at being screened, a person with a disability/rare disease had to have a major role in the production process either in front of or behind the camera. We accepted both short films (between 1 and 10 minutes) and feature-length films (between 10 - 30 minutes) to be screened at The Film Festival. Films could cover any subject matter and be any genre: Drama, Comedy, Documentary, etc. Anything, as long as people with disabilities/rare diseases were expressing themselves! 80 people attended this event.
$5,404 spent7% of program spending
The 4 programs described on its FY2025 Form 990-EZ. Program spending in total: $72,641.
The organization over time
Each line starts at 100 in 2022, so what you read is the shape rather than the size: 150 means half as much again as 2022, 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 2024 to 2025, from $103k to $142k (+38%).
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.
87% of RARE BY DESIGN 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 4 reported years ran a deficit.
Leadership and staff
Chief executive
Kendra Gottsleben
CEO & President
As listed on its FY2025 Form 990-EZ.
Who funds it, year by year
2022 → 2023: the base held at 1 funder, grant income rose $15 → $47.
2 of 2 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 100% 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 RARE BY DESIGN 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
RARE BY DESIGN INC leans on a few funders — its largest provides 100% of grant income and the top three 100%; half comes from just 1 funder.
the vertical line marks half of all grant income — 1 funder to its left
100% 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 RARE BY DESIGN INC.
Largest funder’s share by year: 2022 100% · 2023 100% — broadly stable.
“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
100% of RARE BY DESIGN 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. Too little is directly attributable to place on a map.
Funder states come from each funder’s own filing. $22k arriving through sponsors registered in 2 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
RARE BY DESIGN INC runs a healthier operating margin than three-quarters of the 7,883 health nonprofits its size.
this organization peer median middle 50% of peers· 7,883 health nonprofits $100k–$1M, FY2025
Organizations like RARE BY DESIGN 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 South Dakota
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Footprint & structure
Files a return copy in 1 state
Screen this organization
A dated, signed PDF of the compliance screen for RARE BY DESIGN 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 RARE BY DESIGN INC?
- RARE BY DESIGN INC (South Dakota) receives grants from 2 organizations whose IRS filings report $21,562 to it, the largest being SIOUX FALLS AREA COMMUNITY FOUNDATION INC ($21,500). 2 of them have funded it in more than one year, and 100% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- How many funders does RARE BY DESIGN INC have?
- IRS filings report 2 organizations giving $21,562 in grants to RARE BY DESIGN INC, 2 of which have funded it in more than one year.
- Who is the largest funder of RARE BY DESIGN INC?
- SIOUX FALLS AREA COMMUNITY FOUNDATION INC is the largest funder on record, with $21,500 in grants. The full list of funders is on this page.
- How can an organization like RARE BY DESIGN INC find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in South Dakota. 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 Rare by Design →
These figures are read directly from IRS Form 990 / 990-PF e-file XML: this organization’s own return for FY2025 (financials across 2022–2025), and the filings of 2 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