2020 has not been an easy year for anyone. With global lockdowns affecting the way we live, work, travel and communicate globally, adapting to ever-changing circumstances has been essential. However, for the millions of Australians and people across the globe living with a rare disease, the changes caused by COVID-19 have been even harder to bear. These have created a number of social, economic and health challenges, requiring urgent attention to address.


The impact of isolation.

With self-isolation measures being strictly enforced, the vast majority of patients living with a rare disease experienced some form of interrupted health care due to the effects of COVID-19. These ranged from the postponement or cancellation of surgical procedures and specialist appointments, reduced access to in-home care or therapy, and widespread closures of hospitals or medical clinics.

Taking action to address the issues.

In February 2020, The Australian Government released its National Strategic Action Plan for Rare Diseases, based around three core pillars:

  1. Awareness and Education
  2. Care and Support
  3. Research and Data

These pillars consisted of a number of priorities, including the increased understanding of rare diseases, the person-centred support of those living with rare diseases, and the facilitation of methods to better monitor and support diagnosis and treatment.

The interruption to healthcare services locally, nationally and globally due to the COVID-19 pandemic has underlined the importance of the Action Plan in providing consistent and considered support to patients and families living with rare diseases.

Australia’s national and ever-evolving use of Telehealth is an important step in addressing the communication and logistical issues caused by the pandemic, using purpose-built information and communications technologies (ICTs) such as video conferencing, to keep patients and healthcare professionals connected.

Though uncertainty still remains around the future of COVID-19, the push towards greater education, understanding and research around rare diseases will help to create a strong foundation for the future.

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