Living with a rare disease is difficult and there will be challenging barriers throughout the journey. Challenges are commonly centered around limited local resources, structural barriers to access care, insurance coverage, out of pocket expenses, and pharmacy coverage.

It’s important to have a well-rounded understanding of how these can affect you so that you can be in a good position to prevent challenging situations from occurring or resolve them quickly.

Having a rare disease can place extreme financial pressure on families regardless of their overall income and access to private insurance or government insurance (e.g., Medicare, Medicaid, TriCare). Even with health insurance, out-of-pocket costs (e.g., deductibles, co-pays and medications) can result in financial stress. This stress is amplified for the millions of uninsured US citizens.

Unfortunately, it is impossible to create a one-size-fits-all (or even fits most!) guide to navigate medical access issues. These challenges tend to be situation specific. Nevertheless, if you are faced with an access barrier, the TSC Support Navigators can help discuss your situation and help determine potential resources and options.

Your healthcare team may have resources that they can make available to you upon request. For example:

  • Clinical case managers and social workers may help you identify needs that you might not anticipate, and may help you coordinate care between specialists, provide assistance with school- or job-related forms, and communicate with your insurance provider.
  • Some institutions may be able to provide help with travel or finding financial assistance for transportation to appointments.

If your healthcare team or their institution are unable to help you address those issues, TSC Support Navigators may be able to assist you. Additionally, TSC Support Navigators can help in other areas, including:

Thank you to our TSC Navigator supporters:

Northstar Sponsors

  • Jazz Pharmaceuticals 
  • UCB, Inspired by patients. Driven by science.

Cardinal Sponsors

  • Neurelis
  • Nobel Pharma

Directional Sponsor

  • Noema