Program areas at National Niemann-Pick Disease Foundation
Family support - support services to families who have a family member diagnosed with Niemann-Pick Disease and patient advocacy efforts. Patient advocacy for access to medications and experimental therapies. Emotional support to individuals and families dealing with all types of Niemann-Pick Disease, assistance through crises, information and ideas about issues such as doctors, clinics, insurance companies and other health and human service programs and practical suggestions about day-to-day care. Communications including monthly newsletters, e-news, and social media news updates. The annual nnpdf family support and medical conference brings together families, scientists, and medical professionals to share information and provide support.
Research support - nnpdf supports over 450 diagnosed families at all stages of their Niemann-Pick Disease journey. We provide accurate up-to-date information on the latest advances in medicine and science related to Niemann-Pick Disease. Provision and monitoring of scientific research grants and fellowships to research scientists.
Who funds National Niemann-Pick Disease Foundation
Grants from foundations and other nonprofits
Personnel at National Niemann-Pick Disease Foundation
| Name | Title | Compensation | Date of data |
|---|
| Joslyn Crowe | Executive Director | $130,060 | 2023-12-31 |
| Laurie Turner | Family Services Manager | | 2024-09-23 |
Financials for National Niemann-Pick Disease Foundation
| Revenues | FYE 12/2023 | FYE 12/2022 | % Change |
|---|
| Total grants, contributions, etc. | $552,816 | $526,689 | 5% |
| Program services | $26,030 | $24,017 | 8.4% |
| Investment income and dividends | $4,934 | $1,551 | 218.1% |
| Tax-exempt bond proceeds | $0 | $0 | - |
| Royalty revenue | $0 | $0 | - |
| Net rental income | $0 | $0 | - |
| Net gain from sale of non-inventory assets | $0 | $0 | - |
| Net income from fundraising events | $0 | $0 | - |
| Net income from gaming activities | $0 | $0 | - |
| Net income from sales of inventory | $0 | $0 | - |
| Miscellaneous revenues | $7,397 | $4,414 | 67.6% |
| Total revenues | $591,177 | $556,671 | 6.2% |
Organizations like National Niemann-Pick Disease Foundation
| Organization | Type | Location | Revenue |
|---|
| Foundation for Sarcoidosis Research (FSR) | 501(c)(3) | Chicago, IL | $2,574,104 |
| Osteogenesis Imperfecta Foundation | 501(c)(3) | Gaithersburg, MD | $2,214,512 |
| Gateway Hemophilia Association | 501(c)(3) | Saint Louis, MO | $374,624 |
| National Foundation for Ectodermal Dysplasias | 501(c)(3) | Fairview Heights, IL | $1,161,405 |
| Lone Star Bleeding Disorders Foundation | 501(c)(3) | Houston, TX | $663,733 |
| Great Lakes Hemophilia Foundation | 501(c)(3) | Milwaukee, WI | $1,557,533 |
| National Down Syndrome Congress (NDSC) | 501(c)(3) | Roswell, GA | $1,931,676 |
| Hemophilia Foundation of Southern California (HFSC) | 501(c)(3) | Pasadena, CA | $1,219,925 |
| International FOP Association | 501(c)(3) | North Kansas City, MO | $1,810,030 |
| Spina Bifida Association of Greater New England | 501(c)(3) | Natick, MA | $261,683 |
Data update history
November 29, 2024
Posted financials
Added Form 990 for fiscal year 2023
November 26, 2024
Updated personnel
Identified 1 new personnel
September 23, 2024
Updated personnel
Identified 1 new personnel
November 25, 2023
Posted financials
Added Form 990 for fiscal year 2021
Nonprofit Types
Grantmaking organizationsDisease research fundraisersDisease-focused nonprofitsCharities
Issues
HealthDiseases and disorders
Characteristics
Political advocacyConducts researchOperates internationallyProvides scholarshipsTax deductible donationsAccepts online donations
General information
- Address
- PO Box 49
- Fort Atkinson, WI 53538
- Metro area
- Janesville-Beloit, WI
- County
- Jefferson County, WI
- Website URL
- nnpdf.org/Â
- Phone
- (877) 287-3672
IRS details
- EIN
- 35-1844264
- Fiscal year end
- December
- Taxreturn type
- Form 990
- Year formed
- 1992
- Eligible to receive tax-deductible contributions (Pub 78)
- Yes
Categorization
- NTEE code, primary
- G20: Birth Defects and Genetic Diseases
- NAICS code, primary
- 813212: Health and Disease Research Fundraising Organizations
- Parent/child status
- Independent
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