Rare Disease Advocates
Nonprofit profile at a glance
- EIN
- 993548319
- IRS 990-EZ coverage
- 2024–2024
- Forms available
- Form 990-EZ 2024
- Location
- Los Angeles, CA, USA
- Phone
- 8778295500
- Rating
- 80
- Verdict
- STRONG
- Rating confidence
- Moderate
- Sector
- Public Health Program (Includes General Health and Wellness Promotion Services)
Reported finances
- Revenue
- $123,833
- Expenses
- $116,608
- Assets
- $7,225
- Liabilities
- $0
Source: IRS Form 990-EZ. Selected filing: tax year 2024. Amounts in USD.
Leadership & pay
1 person listed
Executive titles in this filing
- GEORGE YAGHMOUR (CEO/DIRECTOR)
People named in this filing
- GEORGE YAGHMOUR (CEO/DIRECTOR)
Selected names, not a complete roster or a statement of current roles. Open leadership details for the complete filed list.
Source: IRS Form 990-EZ. Selected filing: tax year 2024. Names and roles reflect this filing, not necessarily current officeholders.
Overview
Mission
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
What it reported doing in 2024
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.
Operating model
- Revenue model
- Earned-program. 97% of the money available for current operations came from fees and other program revenue.
- Distribution model
- Direct operator. The filing allocates 100% of reported program-service expenses outside its grant, affiliate-payment, and member-benefit lines. This expense classification does not rule out separately announced grant awards.
The verdict
STRONG - A large share of available resources goes toward mission work and the filed numbers largely add up. Total assets are small relative to annual expenses; liquid coverage is unknown and expenses are high relative to revenue.
Rating breakdown
- Financial Efficiency: 91
- Transparency & Controls: 82
- Sustainability: 36
- Growth: NotEnoughData
Detailed rating inputs
Financial Efficiency
- Mission deployment rate: 88.7%; rating input score 89
- Program expense ratio: 94.2%; rating input score 94
Transparency & Controls
- Consistency checks: 100%; rating input score 100; 52nd percentile among comparable filings
- Major donor itemization: Limited
Sustainability
- Operating margin: 5.8%; rating input score 49; 49th percentile among comparable filings
- Total-asset coverage ratio: 0.06; rating input score 8; 8th percentile among comparable filings
- Liabilities to assets ratio: 0; rating input score 76; 76th percentile among comparable filings
- Officer compensation ratio: 33.8%; rating input score 10; 10th percentile among comparable filings
Growth
- Program expense growth: Limited
- Revenue growth: Limited
- Asset growth: Limited
Details
- Where the money goes: 88.7% of revenue deployed · 94.2% of spending went to programs
- Governance: Filed governance answers
- Accomplishments: 3 filed program accomplishments · $110K in reported program spending
- Leadership: top reported pay $0 · 1 people listed
- Consistency: 8 of 8 current checks pass
- Schedules: 2 filed schedules
- Contacts: How to reach this organization
- Money network: 1 filed money-flow record
- Grant readiness: Federal tax and exclusion status, award history, and grant-maker relationships.
- People: Everyone the filings name, and which of them the filings identify by more than a name.
Key Signals
Signals prioritize questions for review. They are not findings of misconduct.
- High — Sustainability: Total-asset coverage ratio scored 8/100.
- Moderate — Sustainability: Operating margin scored 49/100.
- High — Sustainability: Officer compensation ratio scored 10/100.