Rare Disease Patient Journey

Every person’s experience with a rare disease is unique, but there are many things that people may have in common. This graphic represents some of those commonalities within the different potential phases or stages of life with a rare condition.

You may find yourself in one or more of these phases at the same time and that you’ll move from one to another as you live your life. Click on the boxes below or scroll through the phases on the right to see more details and find links to educational resources and information.

Have a suggestion, know of a helpful resource that should be listed, or think we should add a topic? Contact us! Email PatientAdvocacy@ultragenyx.com

What’s Wrong?

  • Seeking answers
  • Pursuing a diagnosis
  • Finding the right healthcare providers

Now What?

Impact on Daily Living

Education

  • Managing misdiagnoses, misinformation, no information
  • Accessing appropriate healthcare
  • Finding available services or programs
    • Individualized Education Program (IEP)
    • 504 Plan
  • Participating in social activities

Ownership

Transitions

Future

Have a suggestion, know of a helpful resource that should be listed, or think we should add a topic? Contact us! Email PatientAdvocacy@ultragenyx.com