Our Cause

putt4dough is proud to support the Perth Children's Hospital Foundation.

Over the years Perth's generous ICT community has helped us raise a total of $638,000 for the Perth Children's Hospital Foundation. These funds have gone towards the purchase of a state-wide Retcam to screen babies at high risk of blindness, the establishment of an Early Intensive Intervention Program for kids at risk of cerebral palsy, the supply of new cots for Perth Children’s Hospital, and so much more.

Last year, all $75,000 raised went towards the purchase of six Video Reinforcer Systems – the FlexVRA – to improve audiology assessments for children seen by the Perth Children's Hospital's Child Development Service..

About Perth Children's Hospital Foundation

The Perth Children’s Hospital Foundation is the official and largest funder of the Perth Children’s Hospital and the wider Child and Adolescent Health Service after government. Their support in the past 25 years has totalled over $92 million, with a further $21 million committed over the next five years. The Foundation is the 8th largest philanthropic foundation in WA.

Through the support of its generous donors and partners, the Perth Children’s Hospital Foundation is helping to transform the healthcare of WA’s sick children so they can get well and stay well. By working closely with those on the frontline, the Foundation has an in-depth understanding of what clinicians and researchers need in order to have a tangible impact where it counts most.

This knowledge guides the solutions being funded, ensuring sick children and young people have access to world-class care through investment in the most advanced equipment and technology, ground-breaking research, innovative education and training programs, investment in the expertise of world class clinicians, and positive patient and family experiences.

Clinical Centre of Expertise for Rare Diseases (CCERD)

This year, funds will go towards creating the Clinical Centre of Expertise for Rare Diseases (CCERD).

It is time to redefine health care for patients with rare diseases, not just in Western Australia, but around the globe. Over 63,000 children and their families are suffering from rare diseases (RD) in Western Australia alone. With this, comes the turmoil of moving around our health and social systems for years and sometimes decades, without the light of a diagnosis or a map and a guide for coordinated treatment and care.

With WA being considered the best-in-class in RD, the region is perfectly slated for a first-of-its-kind Centre of Expertise that provides revolutionary support for children, families, staff and the community.

Something that simply does not exist under one roof today.

The pressure that a rare disease diagnosis places on patients and families is immeasurable—both mentally and physically. But the framework to cope with this strain isn’t out there.

Despite the enormous burden of rare diseases – awareness, diagnosis, care coordination and intervention impact assessment has been challenging.

We know that:

• There are currently 8,000 known rare diseases
• 400 million people are living with rare disease across the world
• 70% of rare diseases start in childhood
• Today, it takes an average of five years to get a diagnosis for children
• 50% of people living with rare diseases have misdiagnoses, often more than once
• Six in 10 deaths in children and 90% of bed days for death are attributed to rare diseases
• High childhood morbidity and the end-of-life burden make rare disease especially important for the first 1,000 and last 1,000 days of life
• Mental health disorders are much more common in people living with a rare disease
• Health and life journeys are tortuous and not connected.

There is also a huge, unspoken economic impact – A subset of rare disease with statistics in Western

Australia tells us that RD covers more than 10% of hospital inpatient admissions costs (>$400 million p.a.) and brings with it five times higher costs versus non-rare diseases. We also knew that rare disease also brings with it increased Emergency Department presentations and admission to inpatient care rates (2.5x), which are even higher in remote areas. This burden, and the corresponding opportunity is several times more than many common disorders such as diabetes, cancer, heart disease and stroke. We now know that rare diseases in children are more costly than ALL common diseases combined. The cumulatively common rare diseases are the biggest killers, an enormous cause of suffering and the highest cost for kids healthcare.

In order to support these children and families, the Clinical Centre of Excellence for Rare and Undiagnosed Diseases (CCERUD), will be based right here in Perth, Western Australia.

We MUST bring the children out of the shadows and help guide them and their families on new and better journeys. The unmet need is coupled with a once in a lifetime opportunity to deliver life changing impact and shift the status quo. We CAN tap into the four pain points in order to deliver life changing care.

Excitingly, Western Australia, has led the way on improving the lives of people with rare diseases and quantifying the impact of rare diseases on people living with rare diseases, their families, the workforce and the health system, led by Professor Gareth Baynam. Western Australia has;

• Track record of local impact alongside validated global leadership
• Unparalleled world-wide partnerships
• Equitable and sustainable implementation practices
• High-touch and high-tech credibility
• Local and global convergences in people, partnerships, platforms and policy
• Remote and regional innovation.

There’s no better time than right now. There’s no better place than right here. There’s no better rare care.

Bringing together the brilliant minds and compassionate hearts to focus on one child and family at a time, and for all children will allow the CCERD to focus on people, policy and platforms, all starting with serving the needs of children and families.

The CCERD’s innovative work design will allow us to create high-touch experiences, enabled by leading technologies that help to scale and connect our best practices at home, and around the world.

There’s a gap, and it’s time to fill it.