The Rare Diseases NSW Community of Practice (RD NSW CoP) brings together the collective expertise, experience, and passion of those committed to improving outcomes for people living with rare diseases and their families.
We connect healthcare professionals, researchers, patients, families, and advocates across NSW.
We share knowledge, experiences, and best practices in rare disease care and research, working together to address the unique challenges faced by the rare disease community.
To foster collaborative learning and knowledge exchange that supports the holistic health needs of children and adults living with a rare disease, and their families, enabling them to achieve their best possible health and wellbeing outcomes.
To create a thriving community that advances comprehensive, integrated rare disease healthcare through shared expertise, collaborative research, education, and advocacy. Together, we will accelerate the discovery of underlying causes and novel therapies through collective knowledge and experience sharing.
The Rare Diseases NSW Community of Practice is a professional network for knowledge sharing, education, and collaboration. The Community of Practice does not provide medical advice, diagnosis, or treatment recommendations.
Members should always consult with qualified healthcare professionals for individual medical concerns and clinical decisions. The information shared within the Community of Practice should not be used as a substitute for professional medical advice.
We recommend you read our Terms of Reference, then click the button below and complete the form.
We’ll be in touch with details about upcoming meetings.
Frequency: Bi-monthly meetings (attendance either in-person or online)
Format: Meetings rotate between Tuesday, Wednesday, and Thursday to maximise attendance and accommodate diverse schedules
Commitment: Members are encouraged to attend meetings when possible. If you can’t attend, you may nominate a proxy by written notice.
Leadership: