Providing free education on the legal and practical issues to help you navigate health care.

Practical Guide to Navigating Health Care with a Rare Disease

A Practical Guide to Navigating Health Care with a Rare Disease provides clear, practical information about the legal and financial issues that may arise after a rare disease diagnosis. Learn about health insurance, Medicare, accessing specialty care, appeals, managing medical bills, employment rights, disability insurance, support for caregivers, planning ahead, and other topics to help you understand your rights, explore your options, and make informed decisions.

Practical Guide to Navigating Health Care with a Rare Disease

A Look Inside

  • Page 4: Health Insurance Basics
  • Page 8: Health Insurance Options
  • Page 16: Accessing Medical Records
  • Page 17: Getting the Right Diagnosis & Specialty Care
  • Page 19: Understanding Appeals
  • Page 22: Managing Medical Bills
  • Page 24: Your Rights at Work
  • Page 31: Disability Insurance
  • Page 34: Support for Caregivers
  • Page 35: Planning Ahead
Download Here

Explore our Practical Guides

Sharing Our Practical Guide to Navigating Health Care with a Rare Disease

We’re glad you find this resource helpful! Please feel free to share it with your communities or to post a link on your organization’s website. However, this content may not be reproduced, in whole or in part, without the express permission of Triage Cancer. Please email us at TriageHealth@TriageCancer.org to request permission.

If you are a health care professional, we provide free, bulk copies of many of our resources. To make a request, visit TriageHealth.org/MaterialRequest.

Sponsored By