Our approach

Vision

A future where children and their families impacted by rare diseases live happy, fulfilling lives.

Mission

To relieve the suffering and distress caused by rare diseases for children and their families by delivering personalised healthcare services, improving the health and wellbeing of affected Australians.

Full mission statement

We aim to relieve the suffering and distress caused by rare diseases for children aged 0-18 years and their families, so that they may live better lives. Specifically, we aim to: reduce the health and social disadvantage commonly associated with rare diseases; relieve the emotional, psychosocial, and financial burden commonly experienced by affected families, and; identify and address knowledge gaps in the diagnosis, management, and treatment of rare diseases. We will achieve this by delivering personalised healthcare services, thereby improving the health and wellbeing of affected Australians. The Nathan Centre helps children with any form of rare disease, and their families. We act at a grass roots, community level with families, addressing the needs of one child, and one family, at a time.

Why does our work matter?

Rare diseases do not discriminate to one particular disease category (such as cancer). Instead, rare diseases extend across all disease categories (ICD-11, WHO). For example, diseases of the nervous, respiratory, circulatory, musculoskeletal, digestive, immune, visual systems, diseases of the skin, blood, developmental anomalies, cancers.

In Australia, there are 2 million people living with a rare disease – around the same number as people living with diabetes (1.8 million people). But rare diseases are different to common diseases. Unlike diabetes, rare diseases (94% of them) lack any effective treatments. Unlike Diabetes, most rare diseases (82%) have their onset as babies and in early childhood, not adulthood or adolescence. And unlike diabetes, rare diseases lack adequate funding from the Australian Federal Government to fix the multitudinous gaps in healthcare. For example, in 2021, the Australian Federal Government awarded $3.3 million dollars to the peak body for rare diseases. In the same year, the Government awarded $140 million dollars to the peak body for Diabetes.

 

Over 40 times more funding allocated for what is a largely preventable disease (with the exception of type 1 and gestational diabetes) occurring in mostly adults  with effective treatments. Yet our children are left to battle chronic, debilitating diseases with no treatments in sight.

How can we, as a community, reconcile this?

This is a wake-up call. Our children are dying. It is time to act.

The Nathan Centre aligns with the National Strategic Action Plan for Rare Diseases.

The Nathan Centre LTD. is a registered company with the Australian Securities and Investments Commission (ASIC)  ACN 656 235 648. We are a registered health promotion charity with the Australian Not-For-Profits and Charities Commission (ACNC).