Rare Disease on a Page

Rare disease on a page. Key facts about rare diseases.

The challenges of living with a rare disease

People living with a rare disease face many challenges. Rare diseases often first develop during childhood, and most are long-term (chronic) and complex.5-12 People often experience:

  • Difficulty accessing health care
  • Shortened lifespans
  • High care needs
  • Disability
  • Limited care coordination
  • Difficulty getting referrals to specialist health professionals
  • Financial hardships due to out-of-pocket health care costs
  • Ongoing stress, uncertainty, loneliness, and grief.

To read more about rare diseases in Australia, visit: