Liabilities / Assets
57th percentile
Higher debt load relative to assets than 57% of similar nonprofits.
Hereditary Angioedema Association Inc.
990 • Fiscal year 2019 • EIN 25-1852548
Siviq Scores
Precomputed percentiles for this filing year versus similar nonprofits in the same peer cohort.
0.21x
Liabilities / Revenue
50th percentile
Higher debt load relative to revenue than 50% of similar nonprofits.
Net Margin
70th percentile
Higher net margin than 70% of similar nonprofits.
Top Officer Pay
76th percentile
Higher top officer pay than 76% of similar nonprofits.
Top officer pay equals 2.8% of source-year revenue.
Asset Growth
80th percentile
Faster asset growth than 80% of similar nonprofits.
Revenue Growth
85th percentile
Faster revenue growth than 85% of similar nonprofits.
Balance Sheet
Assets
Up$5,488,598
Up $835,888 (+18%) from 2018
Net Assets
Up$4,335,032
Up $867,696 (+25%) from 2018
Liabilities
Down$1,153,566
Down $31,808 (-2.7%) from 2018
Revenue And Expenses
Revenue
Up$7,037,726
Up $1,783,296 (+34%) from 2018
Expenses
Up$6,170,030
Up $1,447,226 (+31%) from 2018
Net Income
Up$867,696
Up $336,070 (+63%) from 2018
Historical Trend
Jump To
Filing Snapshot
- Filing Period
- Jan 1, 2019 to Dec 31, 2019
- Signed
- Nov 11, 2020
- Return Version
- 2019v5.1
- Gross Receipts
- $7,037,726
Mission and Program Overview
Mission
To provide a variety of services to help patients cope with hereditary angioedema, and foster research, patient education, and access to and reimbursement for new therapies.
SEE SCHEDULE O COMMENT.
Balance Sheet Detail
| Line | Beginning | End | Change |
|---|---|---|---|
| Assets | |||
| Savings and Temporary Cash Investments | $4,652,575 | $5,488,598 | ▲ $836,023 |
| Land, Buildings, and Equipment, Net | $135 | - | - |
| Total Assets | $4,652,710 | $5,488,598 | ▲ $835,888 |
| Liabilities | |||
| Other Liabilities | $1,082,624 | $1,043,890 | ▼ $38,734 |
| Accounts Payable and Accrued Expenses | $102,750 | $109,676 | ▲ $6,926 |
| Total Liabilities | $1,185,374 | $1,153,566 | ▼ $31,808 |
| Net Assets / Fund Balance | |||
| Net Assets Without Donor Restrictions | $2,411,410 | $4,141,406 | ▲ $1,729,996 |
| Net Assets With Donor Restrictions | $1,055,926 | $193,626 | ▼ $862,300 |
| Total Net Assets Fund Balance | $3,467,336 | $4,335,032 | ▲ $867,696 |
| Total Liabilities and Net Assets / Fund Balance | $4,652,710 | $5,488,598 | ▲ $835,888 |
Asset Categories
| Asset | Book Value | Depreciation | Basis |
|---|---|---|---|
| Equipment | - | $27,594 | $27,594 |
Compensation and Service Providers
Employees
| Name | Title | Full / Part Time | Base | Total |
|---|---|---|---|---|
| Anthony Castaldo | President | FT | $200,255 | $200,255 |
| Larry Salus | Directorfinancial Director | PT | $61,359 | $61,359 |
Board Members and Trustees
| Name | Title |
|---|---|
| Dr Eric Phillips | Director |
| Henrik Balle Boysen | Director |
| Karen Baird | Director |
| Tricia Mullins | Director |
Revenue and Support
Revenue Composition
- Contributions and Grants
- $6,965,801
- Program Service Revenue
- $27,353
- Investment Income
- $44,572
- Other Revenue
- $0
- All Other Contributions
- $6,965,801
- Change in Net Assets
- $867,696
Audited Revenue Reconciliation
- Revenue per Audited Statements
- $7,037,726
- Total Revenue per Audited Statements
- $7,037,726
- Total Revenue per Form 990
- $7,037,726
Expenses and Functional Allocation
Major Expense Lines
| Line Item | Amount |
|---|---|
| Other Expenses | $3,059,463 |
| Salaries, Compensation, and Employee Benefits | $2,170,634 |
| Grants and Similar Amounts Paid | $939,933 |
| Total Fundraising Expense | $191,319 |
| Professional Fundraising Fees | $0 |
Functional Expense Allocation
| Line Item | Program | Management | Fundraising | Total |
|---|---|---|---|---|
| Other Salaries and Wages | $1,608,540 | $46,034 | $25,784 | $1,680,358 |
| Conferences and Meetings | $1,388,272 | $6,607 | $29,712 | $1,424,591 |
| Grants to Domestic Orgs | $939,933 | - | - | $939,933 |
| Current Officers, Directors, Trustees, and Key Employees | $150,191 | $91,397 | $20,026 | $261,614 |
| Other Expenses | $258,216 | $1,184 | $237 | $258,216 |
| Travel | $227,557 | - | $21,649 | $249,206 |
| All Other Expenses | $130,100 | $10,497 | $59,913 | $200,510 |
| Payroll Taxes | $111,808 | $7,320 | $2,440 | $121,568 |
| Office Expenses | $87,824 | $3,493 | $8,127 | $99,444 |
| Information Technology | $77,074 | - | $17,369 | $94,443 |
| Pension Plan Contributions | $53,904 | $9,469 | $3,157 | $66,530 |
| Fees for Services Accounting | - | $51,328 | - | $51,328 |
| Other Employee Benefits | $31,059 | $7,129 | $2,376 | $40,564 |
| Advertising | $20,864 | $881 | $176 | $21,921 |
| Insurance | $20,072 | $1,068 | $214 | $21,354 |
| Occupancy | $12,989 | $691 | $138 | $13,818 |
| Fees for Services Legal | $9,853 | $780 | - | $10,633 |
| Depreciation Depletion | $127 | $7 | $1 | $135 |
| Total Functional Expenses | $5,740,826 | $237,885 | $191,319 | $6,170,030 |
Audited Expense Reconciliation
| Line Item | Amount |
|---|---|
| Expenses per Audited Statements | $6,170,030 |
| Total Expenses per Audited Statements | $6,170,030 |
| Total Expenses per Form 990 | $6,170,030 |
International Activity
Grant and Assistance Recipients
| Recipient | Location | Category | Purpose | Amount |
|---|---|---|---|---|
| Uc San Diego Foundation | La Jolla, CA | 501c3 | Research & Medicine | $939,933 |
Fundraising, Events, and Gaming
- Fundraising activities
- No
- Gaming activities
- No
- Professional fundraiser used
- No
Fundraising and Gaming Totals
| Line Item | Amount |
|---|---|
| Professional Fundraising Fees | $0 |
Political and Lobbying Activity
- Political campaign activity
- No
- Lobbying activity
- No
- Subject to proxy tax
- No
Debt and Bond Financing
Other Reported Liabilities
| Liability | Amount |
|---|---|
| Pledge to Univ Cali San Diego Fou | $1,043,890 |
Governance and Compliance
Governance Checklist
- Compiled or reviewed by an accountant
- No
- Annual disclosure for covered persons
- Yes
- Audit committee
- Yes
- Backup withholding compliance
- Yes
- Business relationship with 35% controlled entity
- No
- Business relationship with family members
- No
- Business relationship with organization members
- No
- Material changes to governing documents
- No
- Compensation from other sources disclosed
- No
- CEO compensation reviewed
- Yes
- Other officer compensation reviewed
- Yes
- Conflict-of-interest policy
- Yes
- Audited financial statements prepared
- No
- Key decisions subject to board approval
- No
- Management duties delegated
- No
Governance Explanations
Form 990 governing body review Part VI line 11
“The president and financial director are assigned responsibility for review and approval of the federal form 990. The board of directors affirms the filing provided.”
Conflict of interest policy compliance Part VI line 12C
“The board of directors provide self-declarations of possible conflicts of interest as part of the annual meeting responsibilites. Key employees also provide an annual self-declaration. Potential conflicts identified are reviewed and approved if appropriate as a part of the board of directors routine responsibilties.”
CEO executive director top management comp Part VI line 15A
“The board of directors performs an informal review of the presidents salary for comparable responsibilties of like-size and type organizations with recognition of the national and international influence of the services provided. Discussions and conclusions are documented as part of the recording of the minutes of the board of directors including their formal approval of the adjusted compensation and benefits.”
Other officer or key employee compensation Part VI line 15B
“The president, with support of the board of directors, performs an informal review of key manager salaries for comparable responsibilties of like-size and type organizations with recognition of the national and international influence of the services provided. Discussions and conclusions are documented as part of the recording of the minutes of the board of directors including their formal approval of the adjusted compensation and benefits.”
Governing documents etc available to public Part VI line 19
“The organization makes all federal information filings available upon request. Various companies make the federal filings available via the internet.”
Filing and Contact Details
Filer
- Filer Name
- Hereditary Angioedema Association Inc
- EIN
- 25-1852548
- Address
- 10560 MAIN STREET, Fairfax, VA 22030
Signing Officer
- Name
- Larry Salus
- Title
- Financial Direc
- Phone
- 8665808178
- Signed
- 2020-11-11
- Discuss with paid preparer
- Yes
Organization Details
- Principal Officer
- Anthony Castaldo
- Formed
- 2005
- Legal Domicile
- Va
- Voting Board Members
- 6
- Independent Board Members
- 4
- Employees
- 19
- Volunteers
- 1,000
Preparer
- Firm
- ALLAN SMITH AND COMPANY CPAs PC
- Address
- TWO CABOT PLACE SUITE 8, Stoughton, MA 02072
- Preparer
- Allan Smith CPA
- Phone
- 7742065553
Supplemental Narrative
Additional Explanations
List of other expenses Part IX line 24E
“The organization holds a bi-annual patient summit intended to bring together individuals with hereditary angioedema, experts in the clinical, research and academia fields, hereditary angioedema association staff as well as those pharmacutical companies that offer successful therapies (and hopeful future therapies) intended to minimize the impact of symptoms of hereditary angioedema on the daily basis.”
General explanation attachment
“Part iii: briefly describe the organizations mission:the hereditary angioedema associations (haea) overall goal is to be the force behind (1) thwarting the potentially fatal and debilitating nature of hae, and (2) enabling our patient community to achieve life long health. We are a national patient advocacy organization that focuses on: increasing hae awareness and education; driving progresss in clinical care; helping patients gain access to and reimbursement for optimal treatment; maintaining a strong presence in the health legislative and regulatory environments; and fostering molecular level and translational research that features searching for a cure.”
Raw XML AppendixShowing 400 of 459 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.
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| IRS990ScheduleA/Form990ScheduleAPartVIGrp/ExplanationTxt | 0 | IN ACCORDANCE WITH THE BOARD OF DIRECTORS ENDORSED MANDATE (AND ASSOCIATED OPRATIONAL PROCEDURES), THE HAEA CONTINUOUSLY SOLICITS BROAD PUBLIC SUPPORT FOR ITS LIFE-SAVING AND LIFE-GIVING MISSION. NOTWITHSTANDING THE FACT THAT HAE IS AN ULTRA-ORPHAN RARE DISEASE, THE HAEA RECEIVES A SURPRISINGLY LARGE PERCENTAGE OF ITS FUNDING FROM PUBLIC SOURCES. GIVEN THE FACT THAT HAE IS AN ULTRA-ORPHAN RARE DISEASE WITH AN EXTREMELY SMALL NUMBER OF PATIENTS RESIDING IN THE UNITED STATES, THE TARGET POPULATION FOR SOLICITING FINANCIAL SUPPORT IS EXCEPTIONALLY LIMITED. DESPITE THIS INHERENT LIMITATION, THE HAEA HAS BECOME A HIGHLY EFFECTIVE RARE DISEASE PATIENT ADVOCACY ORGANIZATION THAT IS DIRECTLY RESPONSIBLE FOR SAVING COUNTLESS LIVES AND DRAMATICALLY IMPROVING PATIENT QUALITY OF LIFE, YEAR IN AND YEAR OUT. THE HAEAS SUCCESS IS DUE IN LARGE PART TO (1) THE BOARD OF DIRECTORS AND SENIOR MANAGEMENTS COMMITMENT TO MAXIMIZING ITS PUBLIC FUNDRAISING AND (2) A LASER-LIKE FOCUS ON DESIGNING AND IMPLEMENTING PROGRAMS AND ACTIVITIES THAT ARE OF MAXIMUM BENEFITS TO THE HAE PATIENT POPULATION.IT IS IMPORTANT TO NOTE THAT THE HAEAS BOARD OF DIRECTORS AND LEADERSHIP TEAM IS CONSTANTLY SEARCHING FOR INNOVATIVE APPROACHES TO INCREASING GENERAL SUPPORT. INDEED, WHEN IT COMES TO FUNDRAISING, WE DEVOTE AN EXTRAORDINARY AMOUNT OF TIME, ATTENTION AND RESOURCES TO EDUCATING, ENGAGING AND EMPOWERING PATIENTS, THEIR RELATIVES AND EMPLOYERS, AND ANY INTERESTED INDIVIDUAL OR ENTITY. PUBLIC FUNDRAISING EFFORTS WE SPONSOR INCLUDE OUR PATIENT MEET AND GREETS, 5K WALK/RUN EVENTS, HAE DAY EVENTS HELD IN CITIES THROUGHOUT THE USA, AND SOCIA MEDIA FUNDRAISING CAMPAIGNS TARGETING DONATIONS FOR OUR HAEA SCHOLARSHIP PROGRAM AND PATIENT BENEVOLENCE FUND. |
| IRS990ScheduleA/Form990ScheduleAPartVIGrp/FormAndLineReferenceDesc | 0 | 10 Facts and Circumstances Test Part II line 17a or 17b |
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| IRS990ScheduleD/OtherLiabilitiesOrgGrp/Desc | 0 | PLEDGE TO UNIV CALI SAN DIEGO FOU |
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| IRS990ScheduleI/RecipientTable/RecipientEIN | 0 | 952872494 |
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| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 0 | THE PRESIDENT AND FINANCIAL DIRECTOR ARE ASSIGNED RESPONSIBILITY FOR REVIEW AND APPROVAL OF THE FEDERAL FORM 990. THE BOARD OF DIRECTORS AFFIRMS THE FILING PROVIDED. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 1 | THE BOARD OF DIRECTORS PROVIDE SELF-DECLARATIONS OF POSSIBLE CONFLICTS OF INTEREST AS PART OF THE ANNUAL MEETING RESPONSIBILITES. KEY EMPLOYEES ALSO PROVIDE AN ANNUAL SELF-DECLARATION. POTENTIAL CONFLICTS IDENTIFIED ARE REVIEWED AND APPROVED IF APPROPRIATE AS A PART OF THE BOARD OF DIRECTORS ROUTINE RESPONSIBILTIES. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 2 | THE BOARD OF DIRECTORS PERFORMS AN INFORMAL REVIEW OF THE PRESIDENTS SALARY FOR COMPARABLE RESPONSIBILTIES OF LIKE-SIZE AND TYPE ORGANIZATIONS WITH RECOGNITION OF THE NATIONAL AND INTERNATIONAL INFLUENCE OF THE SERVICES PROVIDED. DISCUSSIONS AND CONCLUSIONS ARE DOCUMENTED AS PART OF THE RECORDING OF THE MINUTES OF THE BOARD OF DIRECTORS INCLUDING THEIR FORMAL APPROVAL OF THE ADJUSTED COMPENSATION AND BENEFITS. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 3 | THE PRESIDENT, WITH SUPPORT OF THE BOARD OF DIRECTORS, PERFORMS AN INFORMAL REVIEW OF KEY MANAGER SALARIES FOR COMPARABLE RESPONSIBILTIES OF LIKE-SIZE AND TYPE ORGANIZATIONS WITH RECOGNITION OF THE NATIONAL AND INTERNATIONAL INFLUENCE OF THE SERVICES PROVIDED. DISCUSSIONS AND CONCLUSIONS ARE DOCUMENTED AS PART OF THE RECORDING OF THE MINUTES OF THE BOARD OF DIRECTORS INCLUDING THEIR FORMAL APPROVAL OF THE ADJUSTED COMPENSATION AND BENEFITS. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 4 | THE ORGANIZATION MAKES ALL FEDERAL INFORMATION FILINGS AVAILABLE UPON REQUEST. VARIOUS COMPANIES MAKE THE FEDERAL FILINGS AVAILABLE VIA THE INTERNET. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 5 | THE ORGANIZATION HOLDS A BI-ANNUAL PATIENT SUMMIT INTENDED TO BRING TOGETHER INDIVIDUALS WITH HEREDITARY ANGIOEDEMA, EXPERTS IN THE CLINICAL, RESEARCH AND ACADEMIA FIELDS, HEREDITARY ANGIOEDEMA ASSOCIATION STAFF AS WELL AS THOSE PHARMACUTICAL COMPANIES THAT OFFER SUCCESSFUL THERAPIES (AND HOPEFUL FUTURE THERAPIES) INTENDED TO MINIMIZE THE IMPACT OF SYMPTOMS OF HEREDITARY ANGIOEDEMA ON THE DAILY BASIS. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 6 | PART III: BRIEFLY DESCRIBE THE ORGANIZATIONS MISSION:THE HEREDITARY ANGIOEDEMA ASSOCIATIONS (HAEA) OVERALL GOAL IS TO BE THE FORCE BEHIND (1) THWARTING THE POTENTIALLY FATAL AND DEBILITATING NATURE OF HAE, AND (2) ENABLING OUR PATIENT COMMUNITY TO ACHIEVE LIFE LONG HEALTH. WE ARE A NATIONAL PATIENT ADVOCACY ORGANIZATION THAT FOCUSES ON: INCREASING HAE AWARENESS AND EDUCATION; DRIVING PROGRESSS IN CLINICAL CARE; HELPING PATIENTS GAIN ACCESS TO AND REIMBURSEMENT FOR OPTIMAL TREATMENT; MAINTAINING A STRONG PRESENCE IN THE HEALTH LEGISLATIVE AND REGULATORY ENVIRONMENTS; AND FOSTERING MOLECULAR LEVEL AND TRANSLATIONAL RESEARCH THAT FEATURES SEARCHING FOR A CURE. |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 0 | Form 990 governing body review Part VI line 11 |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 1 | Conflict of interest policy compliance Part VI line 12c |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 2 | CEO executive director top management comp Part VI line 15a |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 3 | Other officer or key employee compensation Part VI line 15b |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 4 | Governing documents etc available to public Part VI line 19 |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 5 | List of other expenses Part IX line 24e |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 6 | General explanation attachment |
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| IRS990/TotalEmployeeCnt | 0 | 19 |
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| IRS990/TotalFunctionalExpensesGrp/ProgramServicesAmt | 0 | 5740826 |
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| IRS990/TotalLiabilitiesEOYAmt | 0 | 1153566 |
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Document Assets
No mirrored PDF or thumbnail assets are attached yet.
Filings
Displayed year
2019 • Form 990Detailed filing. Detailed filing data is available for this year.
- Assets
- $5,488,598
- Liabilities
- $1,153,566
- Net assets
- $4,335,032
- Revenue
- $7,037,726
- Expenses
- $6,170,030
- Net income
- $867,696