Rare lung disease

Approximately 7,000 rare diseases have been identified worldwide. While rare, collectively they affect 6-10% of the Australian population. This equates to approximately 1.2 million people, which is similar to those who suffer from diabetes.Among these rare diseases there are many rare lung diseases.  An Australian registry (ARNOLD) looked at 30 rare lung diseases, however clinicians estimate there are many more than this, perhaps hundreds.

In Australia there is currently very limited, if any, information, support, treatment and research available for people diagnosed with a rare lung disease leaving patients from feeling isolated and helpless.

 
We know that people with a rare disease face very similar problems such as:

  • A delay in diagnosis and treatment is due to lack of knowledge in the medical community
  • Difficulty accessing information, the best service and treatment, either because of locality or because one does not exist
  • Barriers to developing new drugs for treatment
  • Lack of affordable drugs to treat the condition
  • Difficulty navigating the health system and accessing support; whether this is in the form of equipment, financial or peer support.
  • Difficulty finding a doctor to transition a child with a rare disease to appropriate adult services

Lung Foundation Australia is working to raise awareness about the impact of rare lung diseases and the steps required to build a framework that will allow equitable access to care, treatment and support. As the first vital step toward this, we need to raise awareness and funding.

Our current focus areas in rare lung disease include:

References

  1. Call for a national plan for rare diseases, 2009, http://www.apsu.org.au/assets/workshops/rare-diseases/JPCH-Call-for-a-national-plan.pdf