Civic Intelligence

Forgotten Diseases Research Foundation

EIN 45-4470463 • 501(c)3 • Santa Clara, CA

Profile

The forgotten diseases research foundation is a nonprofit dedicated to very rare disorders. The goals are to improve the quality of life of patients with these disorders and to improve research practices in the following ways: -creating a single place for disseminating information about very rare diseases. -helping people diagnose very rare diseases. -discovering the most robust scientific approaches to studying rare diseases. -disseminating information to families that will help them care for sick family members. -educating the public about what can be learned from the study of rare diseases. -making physicians more knowledgeable about these diseases.

604 Malarin AveSanta Clara, CA 95050

www.forgottendiseases.org

Siviq Scores

Precomputed percentiles relative to similar nonprofits. These scores are descriptive rather than judgmental.

Liabilities / Assets

Score unavailable

No value available

Liabilities-to-assets requires both liabilities and assets on the latest valid filing.

Source year 2024

Liabilities / Revenue

Score unavailable

No value available

Liabilities-to-revenue requires both liabilities and revenue on the latest valid filing.

Source year 2024

Net Margin

55th percentile

4.2%

Higher net margin than 55% of similar nonprofits.

501(c)3 • <$500k nonprofits • Source year 2024

Top Officer Pay

95th percentile

$59,625

Higher top officer pay than 95% of similar nonprofits.

Top officer pay equals 68.5% of source-year revenue.

501(c)3 • <$500k nonprofits • Source year 2024

Asset Growth

60th percentile

3.1%

Faster asset growth than 60% of similar nonprofits.

501(c)3 • <$500k nonprofits • Annualized from 2023 to 2024

Revenue Growth

72nd percentile

20%

Faster revenue growth than 72% of similar nonprofits.

501(c)3 • <$500k nonprofits • Annualized from 2023 to 2024

Balance Sheet
Liabilities / AssetsScore unavailable

Assets

Up

$120,425

Up $3,670 (+3.1%) from 2023

Liabilities

-

No earlier filing loaded for comparison.

Net Assets

Up

$120,425

Up $3,670 (+3.1%) from 2023

Operations
Liabilities / RevenueScore unavailableNet Margin55th percentile

Revenue

Up

$87,074

Up $14,670 (+20%) from 2023

Expenses

Up

$83,404

Up $4,787 (+6.1%) from 2023

Net Income

Up

$3,670

Up $9,883 (+159%) from 2023

Trend Graphs

Balance Sheet Trend

Asset Growth60th percentile

Grouped bars show assets, liabilities, and net assets across loaded filings.

$150K$100K$50K$0Assets 2012: $29,296Liabilities 2012: $02012Assets 2013: $41,394Liabilities 2013: $02013Assets 2014: $23,708Liabilities 2014: $02014Assets 2015: $34,445Liabilities 2015: $02015Assets 2016: $46,832Liabilities 2016: $02016Assets 2017: $59,581Liabilities 2017: $02017Assets 2018: $78,461Liabilities 2018: $02018Assets 2019: $105,618Liabilities 2019: $02019Assets 2020: $111,894Liabilities 2020: $523Net Assets 2020: $111,3712020Assets 2021: $129,165Liabilities 2021: $523Net Assets 2021: $128,6422021Assets 2022: $122,968Liabilities 2022: $509Net Assets 2022: $122,4592022Assets 2023: $116,755Net Assets 2023: $116,7552023Assets 2024: $120,425Net Assets 2024: $120,4252024

Highlighted filing

2024

Assets$120,425
Liabilities-
Net Assets$120,425
Open 2024 Filing

Operations Trend

Revenue Growth72nd percentile

Revenue, expenses, and net income by year, with the latest filing highlighted.

$100K$50K$0-$50KRevenue 2012: $61,236Expenses 2012: $31,940Net Income 2012: $29,2962012Revenue 2013: $50,489Expenses 2013: $37,719Net Income 2013: $12,7702013Revenue 2014: $10,380Expenses 2014: $28,066Net Income 2014: -$17,6862014Revenue 2015: $30,669Expenses 2015: $19,932Net Income 2015: $10,7372015Revenue 2016: $30,640Expenses 2016: $18,253Net Income 2016: $12,3872016Revenue 2017: $34,328Expenses 2017: $21,309Net Income 2017: $13,0192017Revenue 2018: $44,167Expenses 2018: $25,557Net Income 2018: $18,6102018Revenue 2019: $45,765Expenses 2019: $18,608Net Income 2019: $27,1572019Revenue 2020: $22,166Expenses 2020: $16,413Net Income 2020: $5,7532020Revenue 2021: $92,887Expenses 2021: $75,616Net Income 2021: $17,2712021Revenue 2022: $21,751Expenses 2022: $27,934Net Income 2022: -$6,1832022Revenue 2023: $72,404Expenses 2023: $78,617Net Income 2023: -$6,2132023Revenue 2024: $87,074Expenses 2024: $83,404Net Income 2024: $3,6702024

Highlighted filing

2024

Revenue$87,074
Expenses$83,404
Net Income$3,670
Open 2024 Filing

Filings

Most recent year

2024 • Form 990EZDetailed filing. Detailed filing data is available for this year.

Open filing
Assets
$120,425
Liabilities
-
Net assets
$120,425
Revenue
$87,074
Expenses
$83,404
Net income
$3,670
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2024Detailed filing. Detailed filing data is available for this year.$1.20$1.20$0.87$0.83$0.04
2023Detailed filing. Detailed filing data is available for this year.$1.17$1.17$0.72$0.79$0.06
2022Detailed filing. Detailed filing data is available for this year.$1.23$0.01$1.22$0.22$0.28$0.06
2021Detailed filing. Detailed filing data is available for this year.$1.29$0.01$1.29$0.93$0.76$0.17
2020Detailed filing. Detailed filing data is available for this year.$1.12$0.01$1.11$0.22$0.16$0.06
2019Summary only. Only limited summary data is available for this year.$1.06$0.00$0.46$0.19$0.27
2018Summary only. Only limited summary data is available for this year.$0.78$0.00$0.44$0.26$0.19
2017Summary only. Only limited summary data is available for this year.$0.60$0.00$0.34$0.21$0.13
2016Summary only. Only limited summary data is available for this year.$0.47$0.00$0.31$0.18$0.12
2015Summary only. Only limited summary data is available for this year.$0.34$0.00$0.31$0.20$0.11
2014Summary only. Only limited summary data is available for this year.$0.24$0.00$0.10$0.28$0.18
2013Summary only. Only limited summary data is available for this year.$0.41$0.00$0.50$0.38$0.13
2012Summary only. Only limited summary data is available for this year.$0.29$0.00$0.61$0.32$0.29
Latest Filing Detail
Jump To
Filing Snapshot
Filing Period
Jan 1, 2024 to Dec 31, 2024
Signed
May 29, 2025
Return Version
2024v5.1
Gross Receipts
$87,074
Mission and Program Overview

Mission

Forgotton diseases research foundation is a nonprofit dedicated to very rare disorders. The goals are to improve the quality of life of patients with these disorders and to improve research practices in the following ways: -creating a single place for disseminating information about very rare diseases. -helping people diagnose very rare diseases. -discovering the most robust scientific approaches to studying rare diseases. -disseminating information to families that will help them care for sick family members. -educating the public about what can be learned from the study of rare diseases. -making physicians more knowledgeable about these diseases.

The forgotten diseases research foundation is a nonprofit dedicated to very rare disorders. The goals are to improve the quality of life of patients with these disorders and to improve research practices in the following ways: -creating a single place for disseminating information about very rare diseases. -helping people diagnose very rare diseases. -discovering the most robust scientific approaches to studying rare diseases. -disseminating information to families that will help them care for sick family members. -educating the public about what can be learned from the study of rare diseases. -making physicians more knowledgeable about these diseases.

Program Services

DescriptionGrantsExpenses
CREATED WEBSITE WHICH IS LARGE REPOSITORY OF GROWTH INFORMATION FOR CHILDREN AROUND THE WORLD INCLUDING 35 COUNTRIES. SUBMITTED LARGE STUDY FOR PUBLICATION. THE STUDY COMPARES GROWTH IN CHILDREN AROUND THE WORLD WITH THE WORLD HEALTH ORGANIZATION'S INTERNATIONAL GROWTH CURVES.-$82,037
Compensation and Service Providers
Top Officer Pay95th percentile

Employees

NameTitleFull / Part TimeBaseOtherTotal
VALERIE NATALETreasurerFT$59,625-$59,625
MARTIN OCONNORPresident-$6,360-$6,360
NATALIA LUKOMSKI QUIROZSecretary-$0--
HEATHER KERRBoard Member-$0--
Filing and Contact Details

Filer

Filer Name
Forgotten Diseases Research Foundation
EIN
45-4470463
Phone
4085295755
Address
604 MALARIN AVE, SANTA CLARA, CA 95050

Signing Officer

Name
Martin O Connor
Title
President
Phone
4085295755
Signed
2025-05-29
Discuss with paid preparer
No

Preparer

Firm
Hrb Tax Group Inc
Address
1301 MAIN ST STE 105F, KANSAS CITY, MO 64108
Preparer
Luz Chow
Phone
8004725625
Supplemental Narrative

Additional Explanations

990-ez Part I Line 16 Other Expenses

“:”

Travel

“$9,059”

Meals

“$968”

Payroll

“$72,493”

Internet

“$114”

Bank Charges

“$15”

Taxes

“$34”

Postage

“$118”

Software

“$253”

Total Other Expenses

“$83,054”

Raw XML Appendix147 raw XML fields

This appendix keeps the raw XML leaves available for debugging and edge-case review. The human report above is the primary experience.

Path#Value
IRS990EZ/ActivitiesNotPreviouslyRptInd0false
IRS990EZ/BooksInCareOfDetail/PersonNm0VALERIE NATALE
IRS990EZ/BooksInCareOfDetail/PhoneNum04085295755
IRS990EZ/BooksInCareOfDetail/USAddress/AddressLine1Txt0604 MALARIN AVE
IRS990EZ/BooksInCareOfDetail/USAddress/CityNm0Santa Clara
IRS990EZ/BooksInCareOfDetail/USAddress/StateAbbreviationCd0CA
IRS990EZ/BooksInCareOfDetail/USAddress/ZIPCd095050
IRS990EZ/CashSavingsAndInvestmentsGrp/BOYAmt0116755
IRS990EZ/CashSavingsAndInvestmentsGrp/EOYAmt0120425
IRS990EZ/ChgMadeToOrgnzngDocNotRptInd0false
IRS990EZ/ContributionsGiftsGrantsEtcAmt086217
IRS990EZ/DonorAdvisedFndsInd0false
IRS990EZ/EngagedInExcessBenefitTransInd0false
IRS990EZ/ExcessOrDeficitForYearAmt03670
IRS990EZ/FeesAndOtherPymtToIndCntrctAmt0350
IRS990EZ/FiledScheduleAInd0true
IRS990EZ/ForeignFinancialAccountInd0false
IRS990EZ/ForeignOfficeInd0false
IRS990EZ/Form990TotalAssetsGrp/BOYAmt0116755
IRS990EZ/Form990TotalAssetsGrp/EOYAmt0120425
IRS990EZ/FundraisingGrossIncomeAmt00
IRS990EZ/GrossReceiptsAmt087074
IRS990EZ/InfoInScheduleOPartIInd0X
IRS990EZ/InvestmentIncomeAmt0857
IRS990EZ/LobbyingActivitiesInd0false
IRS990EZ/MadeLoansToFromOfficersInd0false
IRS990EZ/MethodOfAccountingCashInd0X
IRS990EZ/NetAssetsOrFundBalancesBOYAmt0116755
IRS990EZ/NetAssetsOrFundBalancesEOYAmt0120425
IRS990EZ/NetAssetsOrFundBalancesGrp/BOYAmt0116755
IRS990EZ/NetAssetsOrFundBalancesGrp/EOYAmt0120425
IRS990EZ/OfficerDirectorTrusteeEmplGrp/AverageHrsPerWkDevotedToPosRt04.00
IRS990EZ/OfficerDirectorTrusteeEmplGrp/AverageHrsPerWkDevotedToPosRt10.50
IRS990EZ/OfficerDirectorTrusteeEmplGrp/AverageHrsPerWkDevotedToPosRt20.50
IRS990EZ/OfficerDirectorTrusteeEmplGrp/AverageHrsPerWkDevotedToPosRt340.00
IRS990EZ/OfficerDirectorTrusteeEmplGrp/CompensationAmt06360
IRS990EZ/OfficerDirectorTrusteeEmplGrp/CompensationAmt10
IRS990EZ/OfficerDirectorTrusteeEmplGrp/CompensationAmt20
IRS990EZ/OfficerDirectorTrusteeEmplGrp/CompensationAmt359625
IRS990EZ/OfficerDirectorTrusteeEmplGrp/PersonNm0MARTIN OCONNOR
IRS990EZ/OfficerDirectorTrusteeEmplGrp/PersonNm1NATALIA LUKOMSKI QUIROZ
IRS990EZ/OfficerDirectorTrusteeEmplGrp/PersonNm2HEATHER KERR
IRS990EZ/OfficerDirectorTrusteeEmplGrp/PersonNm3VALERIE NATALE
IRS990EZ/OfficerDirectorTrusteeEmplGrp/TitleTxt0PRESIDENT
IRS990EZ/OfficerDirectorTrusteeEmplGrp/TitleTxt1SECRETARY
IRS990EZ/OfficerDirectorTrusteeEmplGrp/TitleTxt2BOARD MEMBER
IRS990EZ/OfficerDirectorTrusteeEmplGrp/TitleTxt3TREASURER
IRS990EZ/OperateHospitalInd0false
IRS990EZ/Organization501c3Ind0X
IRS990EZ/OrganizationDissolvedEtcInd0false
IRS990EZ/OrganizationHadUBIInd0false
IRS990EZ/OtherExpensesTotalAmt083054
IRS990EZ/PartVIHghstPdCntrctProfSrvcTxt0NONE
IRS990EZ/PartVIOfCompOfHghstPdEmplTxt0NONE
IRS990EZ/PoliticalCampaignActyInd0false
IRS990EZ/PrimaryExemptPurposeTxt0THE FORGOTTEN DISEASES RESEARCH FOUNDATION IS A NONPROFIT DEDICATED TO VERY RARE DISORDERS. THE GOALS ARE TO IMPROVE THE QUALITY OF LIFE OF PATIENTS WITH THESE DISORDERS AND TO IMPROVE RESEARCH PRACTICES IN THE FOLLOWING WAYS: -CREATING A SINGLE PLACE FOR DISSEMINATING INFORMATION ABOUT VERY RARE DISEASES. -HELPING PEOPLE DIAGNOSE VERY RARE DISEASES. -DISCOVERING THE MOST ROBUST SCIENTIFIC APPROACHES TO STUDYING RARE DISEASES. -DISSEMINATING INFORMATION TO FAMILIES THAT WILL HELP THEM CARE FOR SICK FAMILY MEMBERS. -EDUCATING THE PUBLIC ABOUT WHAT CAN BE LEARNED FROM THE STUDY OF RARE DISEASES. -MAKING PHYSICIANS MORE KNOWLEDGEABLE ABOUT THESE DISEASES.
IRS990EZ/ProgramSrvcAccomplishmentGrp/DescriptionProgramSrvcAccomTxt0CREATED WEBSITE WHICH IS LARGE REPOSITORY OF GROWTH INFORMATION FOR CHILDREN AROUND THE WORLD INCLUDING 35 COUNTRIES. SUBMITTED LARGE STUDY FOR PUBLICATION. THE STUDY COMPARES GROWTH IN CHILDREN AROUND THE WORLD WITH THE WORLD HEALTH ORGANIZATION'S INTERNATIONAL GROWTH CURVES.
IRS990EZ/ProgramSrvcAccomplishmentGrp/ProgramServiceExpensesAmt082037
IRS990EZ/ProhibitedTaxShelterTransInd0false
IRS990EZ/RelatedOrganizationCtrlEntInd0false
IRS990EZ/ScheduleBNotRequiredInd0X
IRS990EZ/SchoolOperatingInd0false
IRS990EZ/StatesWhereCopyOfReturnIsFldCd0CA
IRS990EZ/SubjectToProxyTaxInd0false
IRS990EZ/TanningServicesProvidedInd0false
IRS990EZ/TotalExpensesAmt083404
IRS990EZ/TotalProgramServiceExpensesAmt082037
IRS990EZ/TotalRevenueAmt087074
IRS990EZ/TransactionWithControlEntInd0false
IRS990EZ/TrnsfrExmptNonChrtblRltdOrgInd0false
IRS990EZ/TypeOfOrganizationCorpInd0X
IRS990EZ/WebsiteAddressTxt0WWW.FORGOTTENDISEASES.ORG
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearAmt086217
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus1YearAmt072079
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus2YearsAmt020445
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus3YearsAmt092005
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus4YearsAmt021901
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/TotalAmt0292647
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearAmt0857
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus1YearAmt0325
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus2YearsAmt01306
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus3YearsAmt0129
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus4YearsAmt0265
IRS990ScheduleA/GrossInvestmentIncome170Grp/TotalAmt02882
IRS990ScheduleA/OtherIncome170Grp/CurrentTaxYearMinus3YearsAmt0753
IRS990ScheduleA/OtherIncome170Grp/TotalAmt0753
IRS990ScheduleA/PublicOrganization170Ind0X
IRS990ScheduleA/PublicSupportCY170Pct00.98770
IRS990ScheduleA/PublicSupportPY170Pct00.98700
IRS990ScheduleA/PublicSupportTotal170Amt0292647
IRS990ScheduleA/ThirtyThrPctSuprtTestsCY170Ind0X
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearAmt086217
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus1YearAmt072079
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus2YearsAmt020445
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus3YearsAmt092005
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus4YearsAmt021901
IRS990ScheduleA/TotalCalendarYear170Grp/TotalAmt0292647
IRS990ScheduleA/TotalSupportAmt0296282
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt0:
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt1$9,059
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt2$968
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt3$72,493
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt4$114
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt5$15
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt6$34
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt7$118
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt8$253
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt9$83,054
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc0990-EZ PART I LINE 16 OTHER EXPENSES
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc1TRAVEL
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc2MEALS
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc3PAYROLL
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc4INTERNET
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc5BANK CHARGES
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc6TAXES
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc7POSTAGE
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc8SOFTWARE
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc9TOTAL OTHER EXPENSES
ReturnHeader/BuildTS02025-03-06 01:10:19Z
ReturnHeader/BusinessOfficerGrp/DiscussWithPaidPreparerInd0false
ReturnHeader/BusinessOfficerGrp/PersonNm0MARTIN O CONNOR
ReturnHeader/BusinessOfficerGrp/PersonTitleTxt0PRESIDENT
ReturnHeader/BusinessOfficerGrp/PhoneNum04085295755
ReturnHeader/BusinessOfficerGrp/SignatureDt02025-05-29
ReturnHeader/Filer/BusinessName/BusinessNameLine1Txt0FORGOTTEN DISEASES RESEARCH FOUNDATION
ReturnHeader/Filer/BusinessNameControlTxt0FORG
ReturnHeader/Filer/EIN0454470463
ReturnHeader/Filer/PhoneNum04085295755
ReturnHeader/Filer/USAddress/AddressLine1Txt0604 MALARIN AVE
ReturnHeader/Filer/USAddress/CityNm0SANTA CLARA
ReturnHeader/Filer/USAddress/StateAbbreviationCd0CA
ReturnHeader/Filer/USAddress/ZIPCd095050
ReturnHeader/IRSResponsiblePrtyInfoCurrInd0true
ReturnHeader/PreparerFirmGrp/PreparerFirmEIN0431871840
ReturnHeader/PreparerFirmGrp/PreparerFirmName/BusinessNameLine1Txt0HRB TAX GROUP INC
ReturnHeader/PreparerFirmGrp/PreparerUSAddress/AddressLine1Txt01301 MAIN ST STE 105F
ReturnHeader/PreparerFirmGrp/PreparerUSAddress/CityNm0KANSAS CITY
ReturnHeader/PreparerFirmGrp/PreparerUSAddress/StateAbbreviationCd0MO
ReturnHeader/PreparerFirmGrp/PreparerUSAddress/ZIPCd064108
ReturnHeader/PreparerPersonGrp/PhoneNum08004725625
ReturnHeader/PreparerPersonGrp/PreparationDt02025-05-30
ReturnHeader/PreparerPersonGrp/PreparerPersonNm0Luz Chow
ReturnHeader/ReturnTs02025-05-30T21:34:29Z
ReturnHeader/ReturnTypeCd0990EZ
ReturnHeader/TaxPeriodBeginDt02024-01-01
ReturnHeader/TaxPeriodEndDt02024-12-31
ReturnHeader/TaxYr02024

Document Assets

No mirrored PDF or thumbnail assets are attached yet.