Consideration of legislative framework to support the diagnostic odyssey commonly encountered in the instance of rare disease.
New paper on the undiagnostic odyssey, an important topic faced by many rare diseases patients and families – you can find it under “Diagnositc” -.
Western Australia has led the way in Australia in being the first state to establish a rare disease policy framework and an Undiagnosed Diseases Program (UDP) aimed at arriving at a diagnosis through collaboration.
The paper is co-authored by Dr. Gareth Baynam Clinical Professor and Director of the Undiagnosed Diseases Program at the University of Western Australia and Notre Dame. Dr. Gareth is also chair of the IRDiRC Diagnostics Scientific Committee (DSC) that is is committed to support IRDiRC’s diagnostic Goal 1 for 2027:
“All patients coming to medical attention with a suspected rare disease will be diagnosed within one year if their disorder is known in the medical literature; all currently undiagnosable individuals will enter a globally coordinated diagnostic and research pipeline”.
IRDiRC Goal 1