named programs · 3 · from sources
What they call their work
Financial Assistance Program
Provides financial aid to families affected by ROHHAD to help cover travel expenses and unreimbursed medical costs; applications are reviewed by the board
ROHHAD International Consortium
Collaborative network of researchers, clinicians, charities, and families working together to accelerate diagnosis, optimize care, and find a cure for ROHHAD
ROHHAD Reader
Newsletter that updates families and stakeholders on current ROHHAD research and fosters community among physicians, researchers, and families
activities · 4 groups
What they do
-
Rare Genetic Disease Research and Advocacy 3 activities
- Building collaborative research capacity for ROHHADCo-founded the ROHHAD International Consortium in collaboration with research teams and other charities to advance research and improve care for ROHHAD Syndrome.
- Disseminating information about ROHHADProvides detailed information about ROHHAD, including its clinical characteristics and unknown etiology, and produces a newsletter to update families and strengthen connections among physicians, researchers, foundations, and families.
- Expanding knowledge and advancing treatment of ROHHADWorks to expand understanding of ROHHAD syndrome, advance treatment options, and discover a cure, while improving quality of life for affected children and reducing financial burdens on families.
-
-
Genetic and Neurological Disease Research Funding 1 activity
- Funding ROHHAD research projectsFunds five research projects focused on ROHHAD Syndrome, with three based in the USA and Canada and two in Europe, to advance understanding and treatment of the condition.
-
-
Pediatric Medical Care and Research Support 1 activity
- Providing financial assistance to families affected by ROHHADOffers financial support to parents of children with ROHHAD through a formal application and review process, helping cover travel expenses and unreimbursed medical costs associated with the syndrome.
-
-
Charity Event Organization 1 activity
- Raising awareness and funds for ROHHADRaises awareness and funds for ROHHAD research through public events such as sponsoring children in the Mini Mighty Man Youth pool triathlon and other fundraising initiatives.
-
financials · form 990EZ · fy2025
revenue
Total revenue$4K
Contributions & grants$4K100%
Program service revenue——
Investment income——
Other revenue—
expenses
Total expenses$20K
Program expenses66%
Admin / overhead34%
Fundraising0%
Salaries & benefits—
Grants paid out$14K
Largest expense lineFacilities
balance sheet
Total assets$207K
Cash$127K
Investments$0
Liabilities$0
Net assets$207K
Liquid reserves75.3 mo
6 years on record · 2020–2025 · YoY revenue -94.8%
leadership · form 990 part vii · fy2025
Who runs it
board members · 1
- ANNALISA DEFALCO — DIRECTOR
relationships · 7
Who they work with
- CAMP Partner — Collaborates with the Center for Autonomic Medicine in Pediatrics for diagnostic testing and monitoring of ROHHAD patients.
- D1 Multisport Partner — Coaching service that sponsored children's participation in a youth triathlon to support ROHHAD FIGHT INC.
- Lurie's Children's Hospital Partner — Partner institution conducting research on ROHHAD with the aim of improving diagnosis, treatment, and cure.
- ROHHAD Association Partner — Co-founded the ROHHAD International Consortium together with ROHHAD Fight Inc and ROHHAD Association Belgium.
- ROHHAD Association Belgium Partner — Co-founded the ROHHAD International Consortium together with ROHHAD Fight Inc and ROHHAD Association.
- ROHHAD Community Partner — Collaborated to create the ROHHAD Reader newsletter.
- ROHHAD FIGHT Inc. Network — Self-identified nonprofit organization dedicated to ROHHAD research and family support
strategies · 3
How they approach the work
Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.
- Collaborative Knowledge Network for Clinical Advancementmethodology: collaborative-research-networkBy fostering strategic collaboration among clinicians, researchers, families, and charities, the organization accelerates research and improves care for ROHHAD, because shared expertise and coordinated efforts overcome the challenges of a rare disease with limited data and resources.
- Integrated Research and Family Support Modelmethodology: integrated_research_and_family_supportBy advancing research and treatment while simultaneously providing financial and psychosocial support to families, the organization improves health outcomes and quality of life for children with ROHHAD, because addressing both scientific and familial needs creates a synergistic impact on survival and well-being.
- Peer-Based Family Support and Guidancemethodology: peer-supportBy connecting parents through shared lived experience—from diagnosis through disease progression—the organization enhances family resilience and decision-making, because peer support provides actionable insight and emotional grounding that formal systems alone cannot deliver.