Lorem ipsum dolor sit amet, consectetur adipiscing elit. Fusce ex libero, auctor a viverra id, iaculis et enim. Vivamus suscipit mollis ante, sit amet dapibus erat volutpat eleifend. Praesent ultrices non justo in auctor. Morbi eget metus a magna vestibulum interdum ut sed felis. Curabitur at justo sed leo tempor laoreet in ac ex. In hac habitasse platea dictumst. Mauris in orci convallis, sagittis urna sed, vulputate enim. Suspendisse potenti. Aliquam erat volutpat. Proin ante dolor, rhoncus eu est in, laoreet accumsan purus. Vivamus a gravida justo, pretium pulvinar urna. Nullam fringilla commodo massa, ut eleifend quam laoreet vel. Vestibulum quis metus nisi. Etiam ullamcorper semper dui, pretium feugiat felis efficitur et.
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).
- SSI Child Disability Starter Kit Factsheet and Checklist from the Social Security Administration
- SSI Adult Disability Starter Kit Factsheet and Checklist from the Social Security Administration
- Social Security Administration’s Benefits Eligibility Screening Tool (BEST) The BEST tool helps you find out if you could get benefits that Social Security administers. Based on your answers to questions, this tool will list benefits for which you might be eligible and tell you more information about how to qualify and apply.
- Social Security Administration Red Book A summary guide to employment supports for persons with disabilities under the Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) programs
- Social Security definition of disability —Musculoskeletal disorders page Used as a basis to determine eligibility for state insurance benefits
- Social Security definition of disability —Childhood Listings Used as a basis to determine eligibility for state insurance benefits
- Social Security Ticket to Work Program supports career development for Social Security disability beneficiaries age 18 through 64 who want to work.
- Ultimate Guide to Social Security Disability Benefits Blog from MoneySavingPro.com as a guide to Social Security Disability benefits
- Understanding Supplemental Security Income Appeals Process Information from the Social Security Administration
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.
Our Advocacy Partners
