Program areas at Cure HHT
Research - the research program is supportive in funding research for the understanding of the mechanism of HHT disease, novel therapeutic approaches to treatment and management, and translational research leading to multi-center trials. The HHT international scientific conference is held every other year.
Public information - the goal of the public information program is to increase public, private, and governmental awareness of the HHT disorder through the press and the media.
Education - the goal of the education program is to promote education, diagnosis, and best practice treatments related to HHT through patient support, support of conferences, meetings, and comprehensive HHT clinical centers of excellence.
Advocacy - the goal of the advocacy program is to advocate for and support those with HHT by pursuing recognition and funding for awareness, access to expert care and clinical trials.
Who funds Cure HHT
Grants from foundations and other nonprofits
Personnel at Cure HHT
| Name | Title | Compensation | Date of data |
|---|
| Nicole Schaefer | Chief Operating Officer | $89,583 | 2024-11-03 |
| Christopher C.W. Hughes | Chair , North American Scientific and Medical Advisory Council | | 2024-11-03 |
| Marianne Clancy | Executive Director and Senior Director , Strategic Partnerships | $167,703 | 2024-11-03 |
| Scott Olitsky | Global Center of Excellence and Outreach Director | $0 | 2024-11-03 |
| Gary Saum | Former Director | $108,746 | 2023-06-30 |
| ...and 13 more key personnel |
Financials for Cure HHT
| Revenues | FYE 06/2023 | FYE 06/2022 | % Change |
|---|
| Total grants, contributions, etc. | $3,263,861 | $2,356,154 | 38.5% |
| Program services | $410,107 | $23,936 | 1613.3% |
| Investment income and dividends | $55,714 | $13,736 | 305.6% |
| Tax-exempt bond proceeds | $0 | $0 | - |
| Royalty revenue | $0 | $0 | - |
| Net rental income | $0 | $0 | - |
| Net gain from sale of non-inventory assets | $13,387 | $1,780 | 652.1% |
| Net income from fundraising events | $-7,967 | $-22,807 | 65.1% |
| Net income from gaming activities | $0 | $0 | - |
| Net income from sales of inventory | $0 | $0 | - |
| Miscellaneous revenues | $5,763 | $4,286 | 34.5% |
| Total revenues | $3,740,865 | $2,377,085 | 57.4% |
Organizations like Cure HHT
| Organization | Type | Location | Revenue |
|---|
| TSC Alliance | 501(c)(3) | Silver Spring, MD | $10,016,383 |
| National MPS Society | 501(c)(3) | Durham, NC | $2,296,659 |
| The International Waldenstrom's Macroglobulinemia Foundation | 501(c)(3) | Sarasota, FL | $3,292,131 |
| Lupus Foundation of America | 501(c)(3) | Washington, DC | $17,248,744 |
| Alpha-1 Foundation Alpha One Foundation | 501(c)(3) | Miami, FL | $10,453,299 |
| National Psoriasis Foundation | 501(c)(3) | Alexandria, VA | $11,591,439 |
| Boomer Esiason Foundation | 501(c)(3) | Bethesda, MD | $7,304,413 |
| Children's Diabetes Foundation | 501(c)(3) | Aurora, CO | $4,231,939 |
| Pulmonary Hypertension Association | 501(c)(3) | Washington, DC | $6,298,792 |
| Barton Center for Diabetes Education | 501(c)(3) | North Oxford, MA | $3,237,399 |
Data update history
November 3, 2024
Updated personnel
Identified 5 new personnel
July 19, 2024
Updated personnel
Identified 2 new personnel
July 12, 2024
Posted financials
Added Form 990 for fiscal year 2023
July 9, 2024
Used new vendors
Identified 2 new vendors, including , and
Nonprofit Types
Grantmaking organizationsDisease research fundraisersDisease-focused nonprofitsCharities
Issues
HealthEducationDiseases and disordersCommunity improvementBusiness and industry
Characteristics
Provides grantsConducts researchLobbyingFundraising eventsNational levelReceives government fundingEndowed supportFundraising races, competitions, and tournamentsTax deductible donationsAccepts online donations
General information
- Address
- PO Box 329
- Monkton, MD 21111
- Metro area
- Baltimore-Columbia-Towson, MD
- County
- Baltimore County, MD
- Website URL
- curehht.org/Â
- Phone
- (410) 357-9932
IRS details
- EIN
- 22-3115041
- Fiscal year end
- June
- Taxreturn type
- Form 990
- Year formed
- 1990
- Eligible to receive tax-deductible contributions (Pub 78)
- Yes
Categorization
- NTEE code, primary
- G80: Specifically Named Diseases
- NAICS code, primary
- 813212: Health and Disease Research Fundraising Organizations
- Parent/child status
- Independent
California AB-488 details
- AB 488 status
- May Operate or Solicit for Charitable Purposes
- Charity Registration status
- Current - Awaiting Reporting
- FTB status revoked
- Not revoked
- AG Registration Number
- 131567
- FTB Entity ID
- 2351078
- AB 488 data last updated ("as-of") date
- 2024-12-31
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