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:
- Rare Voices Australia (RVA) website. Information and resources from RVA, the national peak body for Australians living with a rare disease: https://rarevoices.org.au.
- Rare Awareness Rare Education (RARE) Portal (RVA). Contains current, reliable, and straightforward information and resources for all rare disease stakeholders customised for the Australian context: https://rareportal.org.au.
- Online Education Portal (RVA). Rare disease resources and courses: https://education.rarevoices.org.au.
- What we’re doing about rare diseases (Department of Health and Aged Care). Information about Federal Government rare disease initiatives: https://www.health.gov.au/topics/chronic-conditions/what-were-doing-about-chronic-conditions/what-were-doing-about-rare-diseases.
