Hempstead, NY

ROHHAD Fight, Inc.

EIN 27-4541404

Health & Wellness Disease & Chronic Illness Support Children & youth Patients & families

Mission

To expand knowledge of the rare syndrome called ROHHAD, advance treatment, discover a cure, enhance the quality of life of children with ROHHAD, and ease the financial burden on affected families.

IRS-recognized 501(c)(3) public charity Contributions are tax-deductible

Claim this page Visit www.rohhadfight.org

About ROHHAD Fight, Inc.

ROHHAD Fight, Inc. is a U.S.-based 501(c)(3) nonprofit dedicated to raising awareness, funding research, and supporting families affected by the rare pediatric disorder ROHHAD (Rapid-onset Obesity with Hypothalamic dysfunction, Hypoventilation, and Autonomic Dysregulation). The organization maintains an active web presence with educational resources, a ROHHAD Reader publication, and fundraising activities to support medical research and family assistance. In recent years the charity has focused grantmaking and fundraising on medical research partnerships and direct support for families, including documented grants to academic medical centers. ROHHAD Fight files annual IRS Form 990 returns and reports programmatic and financial activity consistent with an operating, donor-facing charity.

Notable achievements

Research Grants to Major Centers

Provided multi-thousand-dollar research grants in recent years to academic centers engaged in ROHHAD research (including reported grants to Boston Children’s Hospital and Columbia University supporting clinical and translational work).

Published ROHHAD Reader

Produced and distributed an updated ROHHAD Reader resource for families and clinicians to summarize current knowledge, clinical guidance, and research priorities for the disorder.

Sustained Fundraising & Community Events

Organized and participated in local fundraising events and community drives (for example regionally publicized 'Fight for Charity' events and community tournaments) to raise awareness and funds for research and family support.

At a glance

Total assets: $223K
Annual revenue: $86K
Tax status: 501(c)(3)Public charity
EIN: 27-4541404
Location: Hempstead, NY
Website: www.rohhadfight.org
On Mahalo since: May 2026

Financial figures from the IRS Business Master File, the IRS’s registry of tax-exempt organizations.

Recognition

Listed in nonprofit databases (Candid/GuideStar, CauseIQ) with available Form 990 filings, indicating public financial reporting and donor-facing operations.

Recipient organization profile with a Two‑Star / 73% accountability & finance score on Charity Navigator, reflecting available IRS-reported governance and financial metrics.

Referenced by the international ROHHAD consortium and other ROHHAD-focused networks as the U.S. nonprofit vehicle for donations and research support.

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