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Foundation for Ichthyosis and Related Skin Types

EIN 94-2738019 · Lansdale, PA

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

LegitimacyPassesRegistration and standingFinancial healthGood74 out of 100GovernanceStrong100 out of 100Impact evidenceDescribes programsHow well its results are evidenced

What it says it does

TO IMPROVE THE LIVES AND SEEK CURES FOR THOSE AFFECTED BY ICHTHYOSIS AND RELATED SKIN TYPES.

Income
$966,515
Spending
$1.1 million
Spent on programs
82%
Reserves
23.9 months of spending
Largest source of income
donations and private grants, 86%
Employees
3
Volunteers
80
Highest pay
$206,961, chief exec.

Source: Form 990 for the year ending September 30, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Financial health

Good: 74 out of 100.

  • Reserves

    35 of 35

    Spendable reserves would cover 23.9 months of spending.

  • Debt

    20 of 20

    It owes 2% of what it owns.

  • Living within its means

    4 of 15

    Spending exceeded income by 11% of income.

  • Income trend

    0 of 15

    Income fell 51% on the year before.

  • Spending floor

    15 of 15

    82% of spending went to programs and raising each dollar of donations cost 10 cents.

Source: Form 990 for the year ending September 30, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Governance

Strong: 100 out of 100.

  • Independent board

    25 of 25

    17 of 17 voting board members are independent.

  • Conflict of interest policy

    15 of 15

    Has a written conflict of interest policy.

  • Whistleblower policy

    8 of 8

    Has a written whistleblower policy.

  • Record keeping policy

    7 of 7

    Has a written policy on keeping and destroying records.

  • Board minutes

    5 of 5

    Keeps minutes of board meetings.

  • Board sees the tax return

    10 of 10

    Gave the board a copy of this return before filing it.

  • Pay set independently

    5 of 5

    Sets its chief executive's pay through independent review and comparison.

  • Independent check of accounts

    15 of 15

    Its accounts were audited by an independent accountant.

  • No reported misuse

    10 of 10

    Reports no diversion of assets, excess benefits or loans to insiders.

Source: Form 990 for the year ending September 30, 2025, 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. $685,950 spent. FIRST EDUCATES, INSPIRES, AND CONNECTS FAMILIES AND INDIVIDUALS AFFECTED BY ICHTHYOSIS AND RELATED SKIN TYPES. FIRST HOSTS PATIENT SUPPORT FORUMS AND ALSO PROVIDES CRITICAL INFORMATION TO ITS MEMBERS AND THE GENERAL PUBLIC THROUGH ITS WEBSITE AND CALLS TO ITS KNOWLEDGEABLE STAFF. FIRST MAINTAINS AN ACTIVE SOCIAL MEDIA PRESENCE AND FACILITATES GROUP DISCUSSIONS. FIRST PROVIDES ACCURATE, NON-BIASED INFORMATION ON THE LATEST IN RESEARCH, DIAGNOSIS, AND MANAGEMENT OF ICHTHYOSIS AND RELATED SKIN TYPES, AND CRITICAL SUPPORT TO THOSE AFFECTED WITH THESE GENETIC CONDITIONS AND THOSE THAT CARE FOR THEM.
  2. $191,456 spent. ONE OF THE CORNERSTONES OF FIRST IS ITS EMPHASIS ON RESEARCH AND ITS SUPPORT OF THE YALE ICHTHYOSIS REGISTRY BOTH FINANCIALLY AND THROUGH ITS PROMOTION ACCROSS ITS COMMUNICATION CHANNELS. CRITICAL TO IMPROVING THE MANAGEMENT OF THEIR CONDITION, PARTICIPATION IN THE YALE REGISTRY PROVIDES EACH AFFECTED INDIVIDUAL A GENETIC DIAGNOSIS OF THEIR PARTICULAR TYPE OF ICHTHYOSIS OR OTHER SKIN TYPE. THE REGISTRY IS ALSO VITALLY IMPORTANT TO THE RESEARCH COMMUNITY AND CONTINUES TO BE REFERENCED IN NUMEROUS STUDIES AND MANUSCRIPTS. THE REGISTRY ALSO SERVES TO PROVIDE RESEARCH OPPORTUNITIES FOR TRAINING THE NEXT GENERATION OF PHYSICIAN SCIENTISTS.

Source: Form 990 for the year ending September 30, 2025, 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 October 13, 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 September 2025.

    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 June 1981.

    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 October 21, 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.