For some families or individuals, the medical cost of tuberous sclerosis can be significant. Some families lack the resources necessary to provide for a chronically ill or disabled child. Some individuals with tuberous sclerosis may find it difficult to deal with the financial costs of their disorder. Families or individuals may have trouble finding or affording health insurance. There are several organizations that provide financial assistance. The Tuberous Sclerosis Alliance can provide advice and guidance in managing these issues.
The Social Security Administration provides disability benefits for people who qualify. Tuberous sclerosis is not listed in the publication called the Disability Evaluation Under Social Security, also called the "Blue Book." However, some people with tuberous sclerosis may have specific symptoms that do qualify.
The National Organization for Rare Disorders has links to organizations that can provide financial assistance.
The National Human Genome Research Institute has extensive information on finding financial aid for medical treatment and services.
