Transforming Care Through Expertise and Connection
The Prader-Willi Syndrome Centre of Expertise is a groundbreaking joint initiative of the Prader-Willi Research Foundation Australia (PWRFA), Queensland Children's Hospital (QCH), and Sydney Children's Hospital (SCH). Born from extensive consultation with clinicians, families and carers, the Centre addresses a critical gap in healthcare delivery for people living with PWS.
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Families told us they felt lost when their child was first diagnosed. They described battling access to PWS-informed care, feeling overwhelmed by the amount of information to take in, and struggling with poor coordination across multiple subspecialists. Local health professionals often felt "at sea" when caring for people with PWS, unsure how to navigate the condition's unique complexities.
The reality is stark: people with Prader-Willi Syndrome frequently experience missed diagnoses and repeat hospital presentations due to their atypical presentation of illness. Research by Dr. Laura de Graaff has found that 60% of adults with PWS have a missed medical condition due to their atypical presentation—a finding that underscores the urgent need for specialised expertise and proactive care coordination.
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People with Prader-Willi Syndrome require healthcare that understands their complex, atypical needs. PWS affects multiple body systems, and individuals with the syndrome often present illness differently to the general population. They may not show typical signs of pain or fever, making diagnosis challenging even for experienced clinicians.
Without coordinated, expert care, families face:
Missed or delayed diagnoses
Repeat emergency department visits
Hospitalisations that could have been prevented
Missed school for people living with PWS and impacts on employment for carers.
Exhaustion from acting as case manager, PWS expert, and protocol manager for their loved one
The Centre of Expertise addresses these challenges through dedicated PWS Nurse Coordinators—highly specialised nurses who serve as the vital link between families, healthcare providers, and PWS expertise.
International evidence shows that care coordination for PWS can reduce hospitalisations by 64%, emergency department visits by 90%, and missed medical appointments, missed school days, and missed caregiver work days by around 70%.
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Our PWS Nurse Navigators are here to support families with newborns, newly diagnosed children and adults, and those in crisis. They help you:
Navigate Complex Healthcare Systems
Connect you with PWS-informed specialists and allied health professionals
Coordinate appointments across multiple subspecialists
Ensure all your care providers have the PWS-specific information they need
Access Expert Guidance
Answer questions about typical PWS presentations and behaviours
Provide evidence-based information about PWS management
Connect you to current research and clinical trials
Manage Crisis Situations
Provide guidance on atypical illness presentation in PWS
Support hospital admissions to ensure PWS-informed care
Offer rapid access to expert advice when you need it most
Support Your Family's Journey
Help schools understand your child's needs
Provide information on NDIS funding needs
Connect you with other families and community support
Address the many practical questions that arise, from choosing appropriate childcare to planning travel with medical equipment
Meet Your PWS Nurse Coordinators
Charlotte Ireland-Larritt
PWS Nurse Navigator, Sydney Children's Hospital, Randwick
Charlotte brings deep expertise in coordinating complex care for children with rare conditions. As a Clinical Nurse Specialist (CNS2) at Sydney Children's Hospital, she has become what families describe as "the connective glue" bringing together the many doctors, nurses, and healthcare practitioners required for PWS care.
Charlotte's role encompasses care coordination, system navigation, education and health literacy support, advocacy, and building collaborative networks across the health system. She works closely with families from the moment of diagnosis, helping them navigate the overwhelming early weeks and months, connecting them to the right specialists, and providing clarity when questions arise.
“Children with PWS often face unique challenges, and I’m excited to offer support that helps address their individual needs in a way that celebrates their amazing personalities. This role is not just about coordinating care – it’s about advocating for children and ensuring they get the right support when they need it most.” - Charlotte
Annie Hinde
PWS Nurse Navigator, Queensland Children's Hospital, Brisbane
Annie joins the Centre of Expertise as the PWS Nurse Navigator at Queensland Children's Hospital, bringing her expertise to families across Queensland. With a background in paediatric emergency care, child development, and neurodevelopmental disorders, Annie has worked across oncology, emergency nursing, and clinical research, always with a focus on family-centred care and innovation.
She is passionate about early intervention, collaboration, and advocacy for families.
”I’m excited to bring my expertise and compassion to the Prader-Willi Centre of Expertise, helping shape the future of rare disorder care and supporting families living with Prader-Willi Syndrome.” - Annie
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Charlotte Ireland-Larritt
Prader-Willi Syndrome Nurse Navigator
Sydney Children's Hospital, Randwick
Email: SCHN-SCH-PWS@health.nsw.gov.auAnnie Hinde
Prader-Willi Syndrome Nurse Navigator
Queensland Children's Hospital, Brisbane
Email: CHQ_CCTRND_PWS@health.qld.gov.au -
"Charlotte was the connective glue that brought together the many doctors, nurses, and healthcare practitioners that were required. This was incredibly helpful as it was a tumultuous and busy first three months, when we were processing the diagnosis, learning about the best early interventions, and advocating on behalf of our baby. When something was unclear, we could message her and receive a quick response that frequently brought clarity, connected us to the right person, or shared the experiences of others that had gone before us. She made us feel seen and supported."
— Parents of newborn baby boy -
Who should we see for X?
Is this behaviour typical?
What support might the school need?
What research or clinical trials are available?
How do we coordinate NDIS funding for these needs?
What does atypical presentation look like in PWS when unwell?
Does my child have Autism as well as PWS?
How do we fly overseas with oxygen?
Our Vision
The PWS Centre of Expertise aims to transform health outcomes through coordinated, expert care. By bringing together specialised knowledge, proactive management, and family-centred support, we're working to ensure that every person with PWS receives the care they need, when they need it.
Together, we're not just managing symptoms—we're transforming lives.