The medical cost of Ehlers-Danlos syndrome (EDS) can be significant. Some families lack the resources necessary to provide for a chronically ill child. There are several organizations that provide financial assistance.
The Social Security Administration provides disability benefits for people who qualify. EDS is not listed in the publication called the Disability Evaluation Under Social Security, also called the “Blue Book.” However, people with EDS may still qualify for assistance if they have certain symptoms that 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.
