The MSS Research Foundation – Netherlands
An international organization dedicated to advancing research, awareness, and family support for Marshall-Smith Syndrome. The foundation works to connect families, clinicians, and researchers while funding projects that improve understanding and treatment of MSS.
National Organization for Rare Disorders (NORD) – Marshall-Smith Syndrome
NORD provides medically reviewed information about Marshall-Smith Syndrome, including symptoms, diagnosis, treatment considerations, and available support resources. This is a trusted starting point for families seeking reliable medical education.
NIH Genetic and Rare Diseases Information Center (GARD) – MSS
The National Institutes of Health provides detailed genetic, clinical, and research-based information about Marshall-Smith Syndrome. GARD also helps families locate specialists, research studies, and additional rare disease resources.
Parent to Parent USA
A nationwide network that connects parents of children with special healthcare needs or disabilities with trained peer mentors. Families can receive emotional support, shared experiences, and guidance from others who understand their journey.
Sibling Support Project
Provides support, education, and community programs specifically for siblings of individuals with disabilities or special medical needs. The project helps siblings feel heard, supported, and connected with others in similar situations.
Center for Parent Information & Resources (CPIR) – Early Intervention Overview
Offers guidance on early intervention services available for infants and toddlers with developmental delays or disabilities. CPIR helps families understand eligibility, evaluation processes, and how early therapy services can support development.
Social Security Administration – SSI Benefits for Children
Explains Supplemental Security Income (SSI) benefits for children with disabilities, including eligibility requirements, application steps, and how benefits can assist with medical and daily living expenses.
Medicaid Beneficiary Resources
Provides information about Medicaid healthcare coverage, eligibility, and application guidance. Medicaid can help families access specialized medical care, therapies, and long-term support services.
Tomato Glasses – Adaptive Eyewear for Children
Offers durable, adjustable eyewear designed specifically for children with facial structure differences such as low nasal bridges. These glasses are lightweight, flexible, and designed to stay comfortable during daily activities.
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