Mission
WORLDWIDE PATIENT SUPPORT PROGRAM WHICH INCLUDES A PATIENT REGISTRY, A WEBSITE WITH RARE DISEASE INFORMATION AND PATIENT DISCUSSION FORUM.
Small Public Charity
LYMPHANGIOMATOSIS & GORHAMS DISEASE ALLIANCE INC
Based in SAINT PETERSBURG, FL, LYMPHANGIOMATOSIS & GORHAMS DISEASE ALLIANCE INC operates as a Small Public Charity. The organization reported $119K in revenue, $153K in expenses, $354K in total assets for fiscal year 2025. Imperigo tracks 7 reported grant relationships connected to this organization totaling approximately $742K.
EIN: 261224181
SAINT PETERSBURG, FL
Voluntary Health Associations & Medical Disciplines N.E.C.
NTEE: G99
Latest filing: 2025
Total Revenue$119K
Total Expenses$153K
Total Assets$354K
Grant Records7
Funding Total$742K
Filing Years2021–2025
Where $100 goes at Lymphangiomatosis & Gorhams Disease Alliance Inc
How Lymphangiomatosis & Gorhams Disease Alliance Inc divides every $100 it spends, from its own Form 990-EZ filings, averaged across 8 years.
$68
Programs
the work itself
$32
Everything else
operations and overhead
Form 990-EZ reports program spending but doesn't separate management from fundraising, so those are shown together.
Inside the $68 for programs
$27
Our patient support services included the management of our patient registry to support research needs, track vital information about clas, and answer questions about the diseases
$22
Our outreach program increases awareness of the clas through our website, social media, and events such as cla awareness day and rare disease day
$19
Research
Source: Form 990-EZ filings with the IRS, latest fiscal year 2025. Shares are from the organization's reported expenses. Data by Imperigo; not affiliated with the IRS.
Sample Grants Received
GENERAL SUPPORT
$5,432
$95,000
MENTAL HEALTH GRANT
$15,000
$150,000
$465,000
Showing up to 5 of 7 total records — full history available with membership.
Officers & Directors
BOARD MEMBER
Kevin Martin
DIRECTOR OF OPERATIONS
Louise Murgia
EXECUTIVE DIRECTOR
Michael Kelly
BOARD MEMBER
Mitch Maersch
BOARD MEMBER
Ofelia Rodriguez Nievas
BOARD MEMBER
Samira Farouni
Officer compensation and complete director data available with membership.
Top Grant Purposes
Financial Trends
| Year | Revenue | Expenses | Assets |
|---|---|---|---|
| 2025 | $119K | $153K | $354K |
| 2024 | $271K | $311K | $386K |
| 2023 | $121K | $281K | $422K |
| 2022 | $322K | $320K | $579K |
| 2021 | $323K | $211K | $663K |
Between 2021 and 2025, reported annual revenue declined from $323K to $119K (-63%), with total assets most recently reported at $354K.
Interactive year-over-year charts and full filing details available with membership.