Rare Diseases NSW network
Building a connected, collaborative rare disease community.
The Rare Diseases NSW Community of Practice brings together collective expertise, lived experience and a shared commitment to improving outcomes for people living with rare conditions and their families.
Members share knowledge, experiences and good practice across rare disease care, research, education, advocacy and health-system improvement.
About the Community
The Rare Diseases NSW Community of Practice brings together the collective expertise, experience and passion of people committed to improving outcomes for those living with rare conditions and their families.
People living with rare conditions often move between multiple services, specialties, systems and organisations. The Community creates a place where different perspectives can connect around shared challenges.
The Community shares knowledge, experience and good practice in rare disease care and research, while creating opportunities for collaboration across New South Wales.
The Community supports holistic health and wellbeing today while contributing to better integrated care, research and treatment in the future.
Our mission
To support the holistic health needs of children and adults living with a rare condition, and their families, enabling them to achieve their best possible health and wellbeing outcomes.
Our vision
To advance comprehensive and integrated care through shared expertise, collaborative research, education and advocacy, while accelerating discovery of underlying causes and novel therapies through collective knowledge and experience sharing.
Who joins
The Community of Practice is deliberately multidisciplinary. It brings together lived experience, clinical knowledge, research expertise and health-system insight so members can learn from one another and work on shared priorities.
Clinical care
Connect with expertise beyond your own service, share clinical experience and build relationships that support more coordinated rare disease care.
Research
Connect research with lived experience, clinical practice and health-system priorities while finding new collaborators and opportunities for translation.
Lived experience
Bring lived expertise into conversations about care, research, education and advocacy while connecting with others committed to change.
Policy and systems
Connect evidence, clinical insight and lived experience with policy, strategy and practical health-system improvement.
Advocates, community organisations, industry partners and others whose work aligns with the Community’s purpose are also welcome to participate.
What we do
The Community creates structured opportunities for members to exchange knowledge, learn together, build collaborations and work on priorities that can improve rare disease care, research, education, advocacy and health-system practice.
Members can contribute through meetings, learning activities, collaborative initiatives, research connections, advocacy and work toward stronger national and international alignment.
Regular bi-monthly meetings, with in-person and virtual participation, where members share expertise, challenges and solutions.
Case discussions, presentations and educational sessions that help members learn from different forms of knowledge and experience.
Focused initiatives addressing specific priorities in rare disease care and research.
Connections between researchers, clinicians and patient communities that support meaningful research priorities and opportunities.
A collective voice supporting improved rare disease services, policy and health-system responses.
Working toward recognition as a Centre of Expertise in line with international standards, including frameworks associated with EURORDIS and NORD.
Meetings & leadership
Meetings are designed to make it possible for people across different services, organisations, locations and roles to participate. Members can attend in person or online and contribute in ways that reflect their interests and availability.
The Community meets regularly throughout the year to maintain momentum, share emerging work and develop collaborative responses to shared priorities.
Regular connection across the yearHybrid attendance supports participation from members across New South Wales and from people who cannot travel to the meeting location.
Hybrid participationMeetings rotate between Tuesday, Wednesday and Thursday to maximise attendance and accommodate different work, care and personal schedules.
Tuesday, Wednesday or ThursdayThe Chair provides strategic leadership, while the Executive Officer manages governance and administration, communication and meeting activity.
Chair
Provides strategic leadership and supports the Community’s shared direction and priorities.
a.jaffe@unsw.edu.auExecutive Officer
Manages governance, coordinates meetings, supports members, leads communication, and drives Community activity.
s.mcfedries@unsw.edu.auJoin the Community
Membership is open to people and organisations with an interest in improving rare disease care, research, education, advocacy and health-system practice. Participation is voluntary and can reflect your interests, experience, availability and capacity.
Read the Community’s Terms of Reference, complete the Rare Diseases NSW connection form and select the Community of Practice option.
Members bring different knowledge, roles and experiences. The Community’s principles help create a respectful and productive place for shared learning.
