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Strategy


Our Vision

Australians with rare diseases will have extended and improved lives.


Access to world class, improved, better, best practice in areas of:

  • Diagnosis
  • Treatment
  • Care
  • Services
  • Support services
  • Therapies

Reducing mortality and morbidity enabling the ‘best’ life possible.

 

Our Mission

Rare Voices Australia, the national alliance of people living with a rare disease, will provide a unified voice to improve the lives of all Australians affected by rare diseases.


Our Values

  1. Equity
  2. Accessibility
  3. Collaboration
  4. Transparency
  5. Integrity
  6. Inclusivity
  7. Sustainability
  8. Innovation

 

Our Aims

  1. To bring together all Australians connected through the experience of living with rare diseases by consulting and acting upon the needs of the membership.
  2. To influence public policy in order to achieve the best outcomes for people affected by rare disease.
  3. Promote optimal care outcomes for people living with rare diseases and lobby decision makers in developing these standards across Australia. We will lobby for equality of care for all.
  4. To raise awareness of rare diseases in Australia and their impact in the broader community.
    • We will work to facilitate access to information on rare diseases.
    • We will work to counter discrimination associated with rare diseases.
    • We will work to ensure people affected by rare diseases are informed about their conditions and rights.
  5. To work collaboratively with our member organisations, key stakeholders, healthcare professionals, national and local Government and others to improve the overall care.Liaise with international organisations, bodies and associations aligned to the RVA Aims and Objectives.
    • We will promote excellence in the training of healthcare staff in the diagnosis and management of rare diseases
    • We will encourage appropriate research into rare diseases and its prevalence in Australia