Project Y

Project Y is a groundbreaking initiative developed to deliver much-needed answers to over 500,000 Australian children currently living with a rare disease.

[Project Y @ProjectYUDP]

Our hope for the future is that more people understand rare diseases to make sure that we can get the most from new technologies, research and collaborations globally, to give children living with a rare disease the best chance of a long and full life.

[Project Y @ProjectYUDP]

National Action for Rare Disease
The Federal Health Minister, the Hon Greg Hunt MP, launched the National Strategic Action Plan for Rare Diseases. The Action Plan works towards the best possible health and wellbeing outcomes for Australians living with a rare disease.

[Project Y @ProjectYUDP]

Children with rare diseases may need extra help to develop their self-esteem and self-respect. Recognising their experience is an important first step and creating pathways that focus on quality of life, self respect, social integration and access to more support.

[Project Y @ProjectYUDP]

Funding for rare disease research can have outcomes that reach far beyond the rare disease community.

[Project Y @ProjectYUDP]

Children with rare disease need advocacy to improve the way they live with a rare disease. Strong, positive advocacy has meant that children with rare disease have greater access to diagnosis, holistic care and support.

[Project Y @ProjectYUDP]

Many children with rare disease can ‘fall through the cracks’ of systems as they move from child to adult services. This period is challenging for most children but those with rare diseases have more to contend with.

[Project Y @ProjectYUDP]

It is critical to ensure that all Australians have equal access to medical services and research that will best support their health and that communication supports people making the choices that are best for their child with a rare disease.

[Project Y @ProjectYUDP]

Rare disease and drug treatment

Children with rare disease often need drug treatment as part of their care. Drugs to treat rare disease can be rare ‘orphan drugs’ and many are still in their trial phase when they are used to try and treat people with rare diseases.

[Project Y @ProjectYUDP]

Access to an education is a basic right for every child. We need to make sure children with complex health issues are given the support they need to thrive and reach their potential in education. This includes social, emotional and physical needs as well as their academic needs.

[Project Y @ProjectYUDP]

Children with rare disease have the right to have both their physical and mental needs looked after. It is important to consider the mental health of children and their families living with rare disease because they can experience high levels of stress.

[Project Y @ProjectYUDP]

Living with rare disease can contribute to significant increased stress on families, and financial burden can further this stress. Financial hardship in the families of children with rare diseases may worsen an already difficult situation.

[Project Y @ProjectYUDP]

@arjbarker can’t wait to tell you this joke. Actually, he can wait, but can you?
#ProjectY #TheSuspenseisKillingMe

See the punchline: https://t.co/nQTjuaHBnV

[Project Y @ProjectYUDP]

@arjbarker can’t wait to tell you this joke. Actually, he can wait, but can you?
#ProjectY #TheSuspenseisKillingMe

See the punchline: https://t.co/nQTjuapZZl

[Project Y @ProjectYUDP]

Lily was the first participant in the Undiagnosed Diseases Program.

Discover her journey to diagnosis now:
https://t.co/7UExljlkl9 (scroll to read)

#ProjectY

[Project Y @ProjectYUDP]

Lead by Dr Gareth Baynam, #ProjectY is a groundbreaking initiative that brings together specialist doctors to provide an answer and a diagnosis to the thousands of families who desperately need them. #rarediseases #undiagnosediseases

[Project Y @ProjectYUDP]

Did you know: there are 500,000 children in Australia are living with a rare disease? #ProjectY

[Project Y @ProjectYUDP]

Welcome to the Project Y Twitter account! Follow us as we help to solve the most challenging medical mysteries for children and young adults. #ProjectY