Loading profile…
Pulling IRS BMF, Form 990 filings, peer benchmarks, programs, people, and grants.
Pulling IRS BMF, Form 990 filings, peer benchmarks, programs, people, and grants.
DBA: N/A
EIN 85-4064822 · Snapshot of IRS recognition, filing currency, financial health, and governance.
The foundation is focused on providing education and resources to both families and medical professionals. Its goal is to raise awareness about this rare genetic condition and unite families, researchers, and medical professionals through the facilitation of a patient registry program.
Total Revenue
$39K
FY2024
Total Expenses
$74K
FY2024
Net Assets
$49K
Program Ratio
100.0%
expenses on programs
Employees
—
Volunteers
—
Board Members
—
Voting
—
Independent
8 answers compiled from IRS Form 990, BMF, Pub 78, and the Auto-Revocation List.