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Care Beyond Diagnosis

IRS exemption revoked

Garner, NCUnknown exempt organizationEIN 38-4040391Revenue $162K in FY2020

On file with the IRScarebeyonddiagnosis.org71 Kinsale CT · Garner, NC

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Care Beyond Diagnosis supports patients, families, and communities after a rare disorder Diagnosis through innovative and unique programs. Care Beyond Diagnosis (cbd) understands the issues faced by patients and families Beyond their Diagnosis and medical treatment. Through tailored programs that assist in financial support, logistics, employment opportunities, and general wellbeing cbd hopes to uplift and empower those dealing with a rare disorder in their life.

91¢ of each $1 spent went to programs.
Run by 1 volunteers and 2 employees.
Mission: Form 990 Part I, line 1 · Programs: Part IX · People: Part I, lines 5–6

Before you give

FY2020 · Form 990Independent: from IRS data, not the org
Download 990
IRS status
Revoked
IRS exemption revoked
Concern: the IRS revoked its tax exemption.
IRS Auto-Revocation List
Latest return
FY2020
latest Form 990
Concern: the latest return is for FY2020, 6 tax years back; more than 4 tax years.
IRS e-file · Filing history
Spent on programs
91%
of spending
Looks good: 91% of spending went to programs; 75% or more.
Pt IX · Ln 25 · col B
Cash reserves
10 mo
of spending, in cash
Looks good: 10.1 months of spending in cash; 3 or more.
Pt X · Ln 1–2 · Pt I · Ln 18
Named funders
1
named funder · $25K
Fine: 1 funder names it on their filings; under 3.
Funders’ Sch. I, 990-PF
Liabilities
$0
0% of total assets
Looks good: liabilities are 0% of assets; 50% or less.
Pt X · Ln 26
Independent board members
4
of 4 voting members
Looks good: 4 of 4 voting members are independent, a majority.
Pt VI · Ln 1a–1b
Looks goodFineWorth a lookConcernNo data yetTap a box for the reason.
Revenue
$162K
Spent
$387K
To programs
91%
Net assets
$326K

From the FY2020 Form 990 · see the original

990 PDF Claim
IRS revoked this organization's tax-exempt status on May 15, 2025

Is it real?

No. The IRS revoked its tax exemption. Latest filing on record: FY2020.

IRS Pub. 78 · IRS Auto-Revocation List · IRS Business Master File

Where the money goes

91 cents of each dollar spent went to programs.

Program services 91% · $351K Management & general 9% · $36K

Form 990 Part IX, line 25, columns B–D. Every line is in By the numbers.

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Who runs it and what they're paid

6 people listed on the 990.

Part VII, Section A · reportable compensation
$0Pt VII · Sec A
$0Pt VII · Sec A
Justin Marks
Board Member
$0Pt VII · Sec A
Sierra Myrick
Board Member
$0Pt VII · Sec A
Dele Oyebande
Vice Chair
$0Pt VII · Sec A
$0Pt VII · Sec A
See Care Beyond Diagnosis executive salaries →

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Questions the 990 asks

The form asks each of these directly. These are the filed answers.

  • Family or business ties among officersPt VI · Ln 2Yes
  • Top official's pay set by an independent reviewPt VI · Ln 15aNo

Programs and updates

Supports individuals and families facing rare disorders with financial aid, logistics, and well-being programs.

Questions for Care Beyond Diagnosis

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Provided by the organization

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2 programs · $351K · in their own filed words · FY2020
01

To develop internationally recognized clinical guidelines for rare disease in efforts to bring awareness, financial support, timely diagnosis, and comprehensive treatment to afflicted individuals and their families.

$315Kprogram expense
02

To partner with existing patient advocacy groups to promote education, empowerment, and provide patients with necessary medical equipment. Care beyond diagnosis (CBD) funded two wheelchairs for a rare disease patients in botswana and pakistan.

$36Kprogram expense

Funders

Who pays for it.

From grant filings on record. Receipts are incomplete: individual donors are never listed.

Grants

Schedule I · funders on record
Grants received · FY2021
Beyond Batten Disease FoundationFY2021$25K
Total grants receivedfrom 1 funder$25K

By the numbers

The FY2020 990, line by line.

Download 990
from philanthropy.org
1The main four
Money inPt VIII
$162K
Ln 12
Gifts and grantsLn 1h$162K
Investment incomeLn 3$92
Money outPt IX
$387K
Ln 25
Programscol B$351K
Managementcol C$36K
Owns and owesPt X
$326K
net assets · Ln 32
Cash and savingsLn 1–2$326K
Total assetsLn 16$326K
LiabilitiesLn 26$0
PeoplePt VI, VII
6
listed · VII A
PaidVII A0
Voting boardVI 1a4
IndependentVI 1b4
2In more detail
Revenue in detailPt VIII
Gifts and grantsLn 1h$162K
Investment incomeLn 3$92
Total revenueLn 12$162K
Assets in detailPt X, end of year
CashLn 1$157K
SavingsLn 2$169K
Cash and savings togetherLn 1–2$326K
Total assetsLn 16$326K
LiabilitiesLn 26$0
Net assetsLn 32$326K
OperationsPt I, VI
EmployeesI 52
VolunteersI 61
Fiscal year endsHeaderDecember
Conflict-of-interest policyVI 12aNo
Whistleblower policyVI 13No
Records policyVI 14No
3Year over year
Balance sheet, start vs end of yearPt X · col A, B
LineStart FY20End FY20
Cash and savingsLn 1–2$530K$326K
Total assetsLn 16$530K$326K
LiabilitiesLn 26$0$0
Net assetsLn 32$530K$326K
4Every line
Statement of functional expensesPt IX · every line
LineTotalProgramsManagementFundraising
Pay of current officers, directors and key staffLn 5$160K$160K
Other employee benefitsLn 9$28K$28K
Payroll taxesLn 10$12K$12K
Other fees for servicesLn 11g$141K$141K
Office expensesLn 13$4K$4K
Information technologyLn 14$3K$3K
OccupancyLn 16$606$606
Other expenses (24a–d)Ln 24$38K$37K$499
Total functional expensesLn 25$387K$351K$36K$0

Filing history

YearMoney inMoney outIn minus outNet assetsDownload
FY2020 Latest Viewing $162K$387K−$225K$326K 990 PDF

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Schedules filed Part IV

III · Programs I · Grants R · Related orgs G · Fundraising L · Interested persons A · Public support F · Foreign M · Noncash
See the full FY2020 990 (6 parts)
Part I · Summary $162,125 revenue, 12 lines filed
I-8 Contributions and grantsPrior year $828,993$162,033
I-9 Program service revenue$0
I-10 Investment incomePrior year $5,221$92
I-11 Other revenue$0
I-12 Total revenuePrior year $834,214$162,125
I-13 Grants and similar amounts paid$0
I-14 Benefits paid to members$0
I-15 Salaries and benefitsPrior year $186,187$199,815
I-16a Professional fundraising fees$0
I-17 Other expensesPrior year $537,170$186,873
I-18 Total expensesPrior year $723,357$386,688
I-19 Revenue less expensesPrior year $110,857−$224,563
Part VI · Governance 4 of 4 board members independent, 5 to look at
VI-1a Voting members of the governing body4
VI-1b Independent voting members4
VI-2 Family or business relationship among officers or directorsYes
VI-12a Written conflict of interest policyNo
VI-13 Written whistleblower policyNo
VI-14 Document retention and destruction policyNo
VI-15a Process for setting top official's payNo
Part VIII · Statement of revenue $162,125 across 4 lines filed
VIII-1f All other contributions, gifts and grants$162,033
VIII-1h Total contributions, gifts and grants$162,033
VIII-3 Investment incomeExcluded from tax $92$92
VIII-12 Total revenueExcluded from tax $92$162,125
Part IX · Statement of functional expenses $386,688 across 8 lines filed
IX-5 Pay of current officers, directors and key staffPrograms $160,000$160,000
IX-9 Other employee benefitsManagement $27,575$27,575
IX-10 Payroll taxesPrograms $12,240$12,240
IX-11g Other fees for servicesPrograms $141,376$141,376
IX-13 Office expensesManagement $3,791$3,791
IX-14 Information technologyManagement $3,219$3,219
IX-16 OccupancyManagement $606$606
IX-24 Other expenses (24a–d)Programs $37,382 · Management $499$37,881
IX-25 Total functional expensesPrograms $350,998 · Management $35,690 · Fundraising $0$386,688
Part X · Balance sheet $325,918 assets, 7 lines filed
X-1 Cash, non-interest-bearingStart of year $311,493$157,147
X-2 Savings and temporary cash investmentsStart of year $218,679$168,771
X-16 Total assetsStart of year $530,172$325,918
X-26 Total liabilitiesStart of year $0$0
X-27 Net assets without donor restrictionsStart of year $530,172$325,918
X-32 Total net assets or fund balancesStart of year $530,172$325,918
X-33 Total liabilities and net assetsStart of year $530,172$325,918
Part XI · Reconciliation of net assets $325,918 net assets at year end
XI-1 Total revenue$162,125
XI-2 Total expenses$386,688
XI-3 Revenue less expenses−$224,563
XI-4 Net assets at start of year$530,172
XI-8 Prior period adjustments$20,309
XI-10 Net assets at end of year$325,918

Form 990 e-file (XML) FY2020 from the IRS · Classification, formation year and address from the IRS Business Master File

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