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

As we further develop this framework in partnership with the rare disease patient community, we will develop or link to relevant resources and tools. Please continue to check back and see what’s new from Ultragenyx and our partners. The resources currently linked below can also be found under the “Resources & Learning” tab.

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What's Wrong

What’s Wrong?
  • Seeking answers
  • Pursuing a diagnosis
  • Finding the right healthcare providers

Impact on Daily Living

Impact on Daily Living

Education

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

Ownership

Transitions

Transitions

future

Future
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