Think Rare, Think Care, Think Together

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Think Rare, Think Care, Think Together

Think Rare, Think Care, Think Together

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About this event

Palliative Care Australia (PCA) welcomes you to our first PCA Connect webinar - ‘Think Rare, Think Care, Think Together’. This rare disease webinar is to increase awareness of health care linked to rare diseases in paediatric palliative care.

Those who take part will leave with a better sense of best practise when it comes to caring for children and families living with rare diseases.

Importantly, health professionals will grow a better understanding of the resources, care options, and networks available to support their practise and ultimately children, young people, and their families.


  • Dr Gareth Baynam - Clinical Geneticist and Medical Director, Rare Care Centre, Perth Children’s Hospital. He is a Founding Board Member of the Undiagnosed Diseases Network International, Program Director and Founder of the Undiagnosed Diseases Program WA at GSWA, Head of the WA Register of Developmental Anomalies, Chair of the Diagnostics Scientific Committee of the International Rare Diseases Research Consortium and Founder of Project Y, Lyfe Languages and Cliniface.
  • Sian Gannon CNS - Clinical Nurse Specialist for Education and workforce capacity building in The Rare Care Centre, Perth Children’s Hospital.
  • Stephanie Broley - Senior Genetic Counsellor, Genetic Paediatric Service and Undiagnosed Diseases Program, Genetic Services WA, Perth. She has been working clinically both in paediatrics and the Undiagnosed Diseases Program. A certified genetic counsellor, Stephanie has over 20 years of experience in multiple specialty areas working at The Children’s Hospital at Westmead and Genetic Services WA. As founding co-chair of the Genetic Counselling Working Group of the Undiagnosed Diseases Network International, Stephanie has pursued a special interest in working with families living with rare and undiagnosed conditions through broad scale collaboration and project development.

This webinar is produced in collaboration with the Paediatric Palliative Care National Action Plan Project. This project represents a unique opportunity to support health professionals to respond to the specialist needs of children with life-limiting conditions. The project also addresses the needs of parents and carers seeking assistance to care for a child with high medical needs and life-limiting conditions.

The project is in collaboration with Palliative Care Australia (PCA) and Paediatric Palliative Care Australia New Zealand (PaPCANZ), and funded by the Australian Government.

PCA Connect is a newly developed project providing health professionals a link to learning and community.

The webinar is free to attend.

We look forward to you joining us!