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Living with a progressive neuromuscular disease such as Limb Girdle Muscular Dystrophy can be financially challenging at times.  There are many disability related costs that public and private insurance do not typically cover.  Below are some resources that may be able to provide assistance to help offset the financial burden.

This toolkit is intended to be a “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.

The toolkit also features tips and advice from rare disease professionals and people who have first-hand experience.

Individuals with  Muscular Dystrophy (MD), often face daily challenges in performing essential tasks, including activities in your personal life as well as job functions. If your MD prevents you from earning a living through gainful employment, then you can potentially qualify for disability benefits from the Social Security Administration (SSA).

This toolkit is designed to help you and your partner explore and prepare for genetic and rare disease tests and family planning options and their associated financial considerations.

Within the toolkit, you will also find insights and advice from people living with a rare disease, carriers of a rare medical condition, and experts who can help you choose different family planning paths.

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