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Gorlin Syndrome Alliance

EIN 34-1915691 · Austin, TX

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

LegitimacyPassesRegistration and standingFinancial healthFair68 out of 100GovernanceGood87 out of 100Impact evidenceDescribes programsHow well its results are evidenced

What it says it does

TO THOUGHTFULLY SUPPORT, COMPREHENSIVELY EDUCATE, AND AGGRESSIVELY SEEK THE BEST TREATMENTS AND A CURE FOR THOSE AFFECTED BY GORLIN SYNDROME.

Income
$489,524
Spending
$430,424
Spent on programs
65%
Reserves
5.1 months of spending
Largest source of income
donations and private grants, 98%
Employees
3
Volunteers
29
Highest pay
$92,129, executive director

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

Financial health

Fair: 68 out of 100. Higher than 28% of charities in its peer group (diseases, $250k to $1m).

  • Reserves

    20 of 35

    Spendable reserves would cover 5.1 months of spending.

  • Debt

    10 of 20

    It owes 41% of what it owns.

  • Living within its means

    15 of 15

    Income exceeded spending by 12% of income.

  • Income trend

    15 of 15

    Income rose 59% on the year before.

  • Spending floor

    8 of 15

    65% of spending went to programs and raising each dollar of donations cost 17 cents.

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

Governance

Good: 87 out of 100. Higher than 70% of charities in its peer group (diseases, $250k to $1m).

  • Independent board

    25 of 25

    10 of 10 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

    0 of 10

    Did not give 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

    12 of 15

    Its accounts were reviewed or compiled by an independent accountant, but not audited.

  • No reported misuse

    10 of 10

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

Source: Form 990 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 (1)
  1. $279,283 spent. THE GORLIN SYNDROME ALLIANCE (GSA) ADVANCES ITS MISSION THROUGH TARGETED PROGRAM SERVICES DESIGNED TO SUPPORT PATIENTS AND THEIR FAMILIES, WHILE COALESCING THE BROADER COMMUNITY, INCLUDING PATIENTS, SCIENTISTS AND CLINICIANS, AROUND PRIORITIES THAT IMPROVE HOW PATIENTS LIVE WITH THE DISEASE NOW, AND IN THE FUTURE.RESEARCH GRANT PROGRAMIN 2024, THE GSA ORGANIZED, MANAGED, AND FUNDED THE ONLY RESEARCH GRANT PROGRAM FOR GORLIN SYNDROME, DEDICATED TO IMPROVING QUALITY OF LIFE FOR PATIENTS AND FAMILIES AFFECTED. THROUGH TARGETED INVESTMENT IN SCIENTIFIC LEARNINGS AND INNOVATION, THIS PROGRAM ACCELERATES DISCOVERIES IN THE FIELD. OUR OBJECTIVE IS TO FOCUS RESEARCHERS' EFFORTS ON THE QUESTIONS THAT WILL ILLUMINATE ROOT MECHANISMS OF DISEASE, AND IMPROVE CLINICAL OUTCOMES ON MEASURES THAT MATTER TO PATIENTS. IN 2024, THE GSA RECEIVED MORE THAN DOUBLE THE NUMBER OF RESEARCH PROPOSAL APPLICATIONS FROM THE YEAR PRIOR. THE GRANT REVIEW COMMITTEE SELECTED THE PROPOSAL "DEFINING THE BCC MICROENVIRONMENT CHANGE IN RESPONSE TO SMOOTHENED INHIBITION: IDENTIFICATION OF A ROLE FOR ADDITION OF CHECKPOINT INHIBITOR TO OPTIMIZE ANTITUMOR THERAPY FOR OVERWHELMING DISEASE".PATIENT REGISTRY DATA COLLECTIONTHE GSA MAINTAINED A GORLIN SYNDROME PATIENT REGISTRY, WHICH ENROLLS PATIENTS AND COLLECTS ANONYMIZED HEALTH HISTORIES FROM PARTICIPANTS FOR THE PURPOSE OF CENTRALIZING DATA ABOUT GORLIN SYNDROME. THE DATA WILL DRIVE DISCOVERIES. THE GSA ENROLLED NEW PARTICIPANTS DURING 2024, WITH THE OBJECTIVE OF GROWING THE REGISTRY PARTICIPATION YEAR ON YEAR.EDUCATIONAL RESOURCESTHE GSA PROVIDED FREE, PUBLICLY AVAILABLE EDUCATIONAL RESOURCES, INCLUDING PATIENT FOCUSED EDUCATIONAL MATERIALS, WEBINARS, AND EXPERT PRESENTATIONS. THESE MATERIALS ARE MADE AVAILABLE AT NO COST TO INDIVIDUALS ACROSS THE US THROUGH OUR WEBSITE AND YOUTUBE CHANNEL.COMMUNITY AND PATIENT SUPPORT SERVICESTHE GSA FACILITATED 12 VIRTUAL SUPPORT GROUP MEETINGS, 4 TOWN HALL MEETINGS, AND AD HOC IN-PERSON GATHERINGS FOR PATIENTS AND FAMILIES. TELEPHONIC SUPPORT AND ASSISTANCE WAS PROVIDED THROUGHOUT THE YEAR, WITH STAFF AND VOLUNTEERS RESPONDING TO 119 INCOMING TELEPHONE CALLS AND COUNTLESS EMAILS FROM PATIENTS, FAMILIES, OR CLINICIANS. INFORMATION DISSEMINATION AND COMMUNICATIONSTHROUGH ITS COMMUNICATIONS STRATEGY, THE GSA DISTRIBUTED (12) MONTHLY E-NEWSLETTERS, WITH ADDITIONAL, TARGETED RESEARCH UPDATES. INFORMATION INCLUDED EMERGING THERAPIES, CLINICAL TRIAL OPPORTUNITIES, AND PATIENT SUPPORT SERVICES. THROUGH VOLUNTEERS AND STAFF, THE GSA ALSO MADE HUNDREDS OF CALLS TO COMMUNITY MEMBERS TO ENSURE CRITICAL INFORMATION WAS SHARED. IN ADDITION, RESEARCH AND GRANT OPPORTUNITY ANNOUNCEMENTS WERE CIRCULATED TO CLINICIANS AND SCIENTISTS IN THE GSA NETWORK.

Source: Form 990 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 March 2024.

    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.