Rare Disease Advocates
Public records show a registered, tax-exempt organization in good standing.
What it says it does
AT RARE DISEASE ADVOCATES ORGANIZATION, OUR MISSION IS TO EMPOWER AND UPLIFT INDIVIDUALS IMPACTED BY RARE DISEASES. RARE DISEASE ADVOCATES IS A NON-PROFIT ORGANIZATION DEDICATED TO RAISING PROVIDER AWARENESS, PROVIDING PATIENT SUPPORT, AND ADVOCATING FOR BETTER RESOURCES AND RESEARCH FOR THOSE LIVING WITH RARE MEDICAL CONDITIONS.WE SERVE HEALTH CARE PROVIDERS AROUND THE COUNTRY BUT PRIMARILY FOCUSING ON SOUTHERN CALIFORNIA BY CONDUCTING EDUCATIONAL SEMINARS AND PROVIDING FINANCIAL SUPPORT TO RARE DISEASE PATIENTS. THERE ARE OVER TEN THOUSAND RARE DISEASES. RARE DISEASES ARE ESTIMATED TO AFFECT MORE THAN THIRTY MILLION PEOPLE IN THE UNITED STATES. EACH DISEASE MAY BE RARE INDIVIDUALLY, BUT PEOPLE WITH RARE DISEASES OFTEN FACE SIMILAR CHALLENGES. THESE CHALLENGES MAY INCLUDE ACCESSING INFORMATION, GETTING A DIAGNOSIS, AND FINDING RESOURCES.OUR ORGANIZATION'S THREE PRIMARY OBJECTIVES:RAISE AWARENESS, PROVIDE SUPPORT AND ADVOCATE FOR CHANGE
- Income
- $123,833
- Spending
- $116,608
- Reserves
- 0.7 months of spending
- Largest source of income
- fees for its services, 97%
- Highest pay
- $39,375, ceo/director
Source: Form 990EZ for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Financial health
Fair: 56 out of 100. Higher than 25% of charities in its peer group (health care, under $250k).
Reserves
4 of 35Spendable reserves would cover 0.7 months of spending.
Debt
20 of 20It owes 0% of what it owns.
Living within its means
15 of 15Income exceeded spending by 6% of income.
Source: Form 990EZ for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Governance
This organization files the short tax form, which does not ask about boards, policies or audits. That is normal for a small charity and is not a mark against it.
Source: Form 990EZ for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Impact evidence
Describes programs. Its tax return describes what it does but we have found no measurable results in it.
Programs described in its return (3)
- $80,186 spent. EDUCATIONAL CONFERENCE SERIES ON PNH AND MDS: FROM AUGUST TO NOVEMBER 2024, RARE DISEASE ADVOCATES LAUNCHED A SERIES OF EDUCATIONAL SEMINARSFOCUSED ON PAROXYSMAL NOCTURNAL HEMOGLOBINURIA (PNH) AND MYELODYSPLASTIC SYNDROMES (MDS). EACHEVENT FEATURED A CLINICAL PRESENTATION LED BY A PHARMD AND MD TEAM, DELIVERED TO A TARGETED AUDIENCE OFHEALTHCARE PROFESSIONALS INCLUDING PHYSICIANS, FELLOWS, NURSE PRACTITIONERS, AND PHARMACISTS. THESESESSIONS EMPHASIZED DIAGNOSTIC CHALLENGES, DISEASE PROGRESSION, AND EMERGING TREATMENT STRATEGIES TOIMPROVE AWARENESS AND CLINICAL OUTCOMES FOR THESE RARE HEMATOLOGIC CONDITIONS. NOTABLY, FOLLOWING TWOOF THESE SESSIONS, ATTENDING PHYSICIANS REPORTED DIAGNOSING PATIENTS WITH ONE OF THE DISCUSSED RAREDISEASES, HIGHLIGHTING THE DIRECT CLINICAL IMPACT OF THE EDUCATION PROVIDED.
- $19,657 spent. EDUCATIONAL CONFERENCE SERIES ON MYELOFIBROSIS, AML, AND BPDCN: THE FINAL EDUCATIONAL EVENT IN DECEMBER 2024 FOCUSED ON MYELOFIBROSIS (MF), ACUTE MYELOID LEUKEMIA(AML), AND BLASTIC PLASMACYTOID DENDRITIC CELL NEOPLASM (BPDCN). LIKE PRIOR CONFERENCES, THE SESSION WAS PRESENTED BY A PHARMD AND MD TEAM TO A TARGETED AUDIENCE OF HEALTHCARE PROFESSIONALS INCLUDING PHYSICIANS, FELLOWS, NURSE PRACTITIONERS, AND PHARMACISTS. THE GOAL WAS TO PROVIDE EDUCATION ON THE LATEST TREATMENT STRATEGIES, IMPROVE DISEASE RECOGNITION, AND HIGHLIGHT PATIENT CARE CONSIDERATIONS SPECIFIC TO THESE RARE HEMATOLOGIC MALIGNANCIES.
- $9,956 spent. ORGANIZATIONAL INFRASTRUCTURE DEVELOPMENT: IN ITS FOUNDATIONAL YEAR, RARE DISEASE ADVOCATES FOCUSED ON ESTABLISHING THE INTERNAL INFRASTRUCTUREREQUIRED TO SUPPORT LONG-TERM, MISSION-ALIGNED PROGRAMMING. THIS INCLUDED DEVELOPING AND LAUNCHINGTHE ORGANIZATION'S OFFICIAL WEBSITE, SETTING UP A DONATION PORTAL AND NONPROFIT BANK ACCOUNT, AND INITIATING PARTNERSHIPS WITH SEVERAL PHARMACEUTICAL SPONSORS. THESE EFFORTS LAID A STRONG GROUNDWORK FOROPERATIONAL EFFICIENCY, DONOR ENGAGEMENT, AND STRATEGIC GROWTH IN THE RARE DISEASE ADVOCACY SPACE.
Source: Form 990EZ for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Legitimacy checks
Is it registered with the IRS? Passed.
Listed in the IRS master file of tax-exempt organizations as a 501(c)(3) charitable organization.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
Has the IRS revoked its tax-exempt status? Passed.
Not on the IRS automatic revocation list.
Source: Automatic revocation of exemption list, Internal Revenue Service, file dated October 13, 2026.
Are donations tax-deductible? Passed.
On the IRS list of organizations eligible to receive tax-deductible contributions.
Source: Publication 78 data: organizations eligible for tax-deductible contributions, Internal Revenue Service, file dated October 13, 2026.
Is it keeping up with its IRS filings? Passed.
Most recent return on file covers the year ending December 2024.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
How long has it been tax-exempt? Passed.
Recognized by the IRS since September 2024.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
Is it in good standing with state regulators? Passed.
Not on California's list of charities barred from soliciting. Other states are not yet checked.
Source: May Not Operate or Solicit for Charitable Purposes list, California Attorney General, Registry of Charities and Fundraisers, file dated October 21, 2026.
Ratings and checks are our reading of public records, using the published method. They are not a statement about anyone's honesty. If you work for this organization, you can send corrections or results, confirm you want gifts through Veridonate, or ask to be removed from giving.