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Noonan Syndrome Foundation

EIN 46-1871620 · Blue Springs, MO

Public records show a registered, tax-exempt organization in good standing.

LegitimacyPassesRegistration and standingFinancial healthGood79 out of 100GovernanceNot ratedThe short tax form does not cover thisImpact evidenceDescribes programsHow well its results are evidenced

What it says it does

The mission of the Noonan Syndrome Foundation is to support, educate and advocate for those diagnosed with Noonan's Syndrome by supporting research for the development of effective treatments, and ultimately, a cure for the syndrome. Noonan's Syndrome is identified by a genetic mutation in the RAS/MAPK pathway and is expressed in many ways, over numerous systems in patients. The Noonan Syndrome Foundation supports patients and families by providing information online and in regular publications, holding regional events, conferences and support groups. Connecting patients and families to caregivers familiar with Noonan Syndrome is of the utmost importance ot the Foundation as well. Another goal is to increase public awareness of Noonan Syndrome to allow for accurate diagnosis by medical providers and to allow for those not affected by the syndrome to understand the challenges of those affected and to increase financial support

Income
$63,977
Spending
$142,841
Reserves
17.5 months of spending
Largest source of income
fees for its services, 49%

Source: Form 990EZ for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Financial health

Good: 79 out of 100. Higher than 53% of charities in its peer group (health care, under $250k).

  • Reserves

    35 of 35

    Spendable reserves would cover 17.5 months of spending.

  • Debt

    20 of 20

    It owes 0% of what it owns.

  • Living within its means

    0 of 15

    Spending exceeded income by 123% of income.

Source: Form 990EZ for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Governance

This organization files the short tax form, which does not ask about boards, policies or audits. That is normal for a small charity and is not a mark against it.

Source: Form 990EZ for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Impact evidence

Describes programs. Its tax return describes what it does but we have found no measurable results in it.

Programs described in its return (2)
  1. We have an online support group with over 9000 participants. We host a biennial family conference on even numbered years with over 220 registrants.
  2. $142,842 spent. 2024 Noonan Syndrome foundation family conference. We hosted a meeting where we brought medical professionals familiar with NS to families to educate them and to offer support to each other. There were 275 attendees.

Source: Form 990EZ for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Legitimacy checks

  1. Is it registered with the IRS? Passed.

    Listed in the IRS master file of tax-exempt organizations as a 501(c)(3) charitable organization.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  2. Has the IRS revoked its tax-exempt status? Passed.

    Not on the IRS automatic revocation list.

    Source: Automatic revocation of exemption list, Internal Revenue Service, file dated November 6, 2026.

  3. Are donations tax-deductible? Passed.

    On the IRS list of organizations eligible to receive tax-deductible contributions.

    Source: Publication 78 data: organizations eligible for tax-deductible contributions, Internal Revenue Service, file dated October 13, 2026.

  4. Is it keeping up with its IRS filings? Passed.

    Most recent return on file covers the year ending December 2024.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  5. How long has it been tax-exempt? Passed.

    Recognized by the IRS since November 2013.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  6. Is it in good standing with state regulators? Passed.

    Not on California's list of charities barred from soliciting. Other states are not yet checked.

    Source: May Not Operate or Solicit for Charitable Purposes list, California Attorney General, Registry of Charities and Fundraisers, file dated November 4, 2026.

Ratings and checks are our reading of public records, using the published method. They are not a statement about anyone's honesty. If you work for this organization, you can send corrections or results, confirm you want gifts through Veridonate, or ask to be removed from giving.