In addition to the physical, mental, and emotional hardships of living with a rare disease, the costs can be astronomical. According to the National Economic Burden of Rare Disease Study,1 conducted by the EveryLife Foundation for Rare Diseases, the economic cost of 379
rare diseases reached nearly $1 trillion in 2019. One study from the National Center for Advancing Translational Sciences found that health care costs for individuals living with rare diseases are 3 to 5 times greater than the costs for people without a rare disease.
One way to ease this burden is to take full advantage of the Medicare benefit program, which is available to people over the age of 65 and those who qualify for Social Security Disability Insurance (SSDI). Although many adults with rare diseases qualify for Medicare, figuring out how to do this can be incredibly challenging, time-consuming, and frustrating.
This toolkit is intended to make it easier for you to receive all the benefits you deserve. It’s a high-level, “how-to” guide designed specifically for people living with rare diseases and rare disease advocates. It answers questions about Medicare and other options for financial assistance that are especially relevant to people with disabilities, including:
- Can I receive Medicare before I’m 65?
- Is it available for my child?
- How do I apply?
- What types of Medicare insurance are available?
- Are there other health and financial assistance programs I should consider?
- Are there differences in coverage depending on the state I live in?
- What else should I know to expedite and optimize my benefits?
The toolkit also features tips and advice from rare disease professionals and people who have first-hand experience navigating a slow and often frustrating process. Their insights can help you make informed decisions and avoid common and costly mistakes.