Lived experience leadership
People living with rare and undiagnosed conditions, families and communities helping shape the systems, research and services that affect their lives.
RarePower is the patient, family and community leadership group at the heart of Rare Diseases NSW. It creates a way for lived experience to help shape our priorities, research, care, education, resources and service design.
RarePower is about genuine partnership—not consultation after decisions have already been made. We want lived experience involved from the beginning, helping define what matters, what should change and what success looks like.
What is RarePower?
RarePower creates a way for people living with rare and undiagnosed conditions, families and communities to help lead the design and improvement of the work intended to support them.
That means bringing lived experience together with clinical, research, education and system expertise from the beginning — not waiting until a project, service or resource is almost finished before asking what people think.
Consultation alone
Traditional consultation can involve seeking people's views once priorities, options or solutions have already been substantially determined.
RarePower partnership
RarePower aims to involve lived experience earlier, so people can help identify priorities, shape approaches and contribute to how success is understood.
What this means in practice
Lived experience should help identify needs, questions and priorities before solutions are already decided.
RarePower is intended to create meaningful opportunities for lived experience to influence priorities, design and improvement.
Lived experience, clinical, research, education and system expertise can work together to develop and improve approaches that respond to real needs.
How it works
RarePower is designed to keep patient, family and community knowledge connected to the work of Rare Diseases NSW. It sits at the centre of four connected areas: wrap-around care; research, trials and data; education and workforce; and advocacy and community.
At the centre
Patient, family and community leadership helping shape priorities, design, implementation and improvement across Rare Diseases NSW.
Care
Lived experience can help identify where care is fragmented, what information people need and what would make services easier to navigate.
Discovery
Patient and community knowledge can help research focus on questions and outcomes that matter to people living with rare conditions.
Learning
Lived experience can help health professionals understand the realities of rare conditions alongside clinical and scientific knowledge.
Systems & community
Community perspectives can help identify barriers beyond hospital walls and inform work to improve systems, equity and connection.
From experience to improvement
Understand experiences, barriers, priorities and what matters to people and families.
Bring lived experience together with other expertise to shape priorities, ideas and approaches.
Carry partnership through into resources, research, services, education and other work.
Keep learning from people's experiences and use that learning to inform ongoing improvement.
What you can shape
RarePower can bring lived experience into different parts of Rare Diseases NSW's work. The opportunities will vary depending on what is being developed, tested or improved and on the experience, interests and perspectives people want to contribute.
Care
Help identify what people and families need from services and where current systems create unnecessary barriers.
Tools
Help make information and practical tools more useful, understandable and responsive to people's real needs.
Research
Help research teams understand which questions, outcomes and approaches are meaningful to people affected by rare conditions.
Learning
Help health professionals, students and others learn from lived experience alongside clinical and scientific knowledge.
Systems
Help identify systemic barriers and bring community priorities into conversations about how systems can work better.
Improvement
Help us understand whether work is useful in practice and what needs to change as we learn.
Participation can look different
Different opportunities can require different amounts of time, experience and involvement. Some people may want to contribute occasionally; others may be interested in more sustained co-design or leadership opportunities.
Who can be involved?
Rare conditions affect people, families and communities in different ways. RarePower aims to bring together a diversity of lived experience so the work of Rare Diseases NSW can learn from more than one perspective.
Lived experience
People who bring first-hand experience of navigating health, care, diagnosis, uncertainty, treatment and everyday life with a rare or undiagnosed condition.
Families & care
Parents, carers and family members can bring important experience of supporting someone through healthcare, services, education, transitions and daily life.
Wider experience
Rare conditions can affect the whole family and support network. Siblings and other support people can bring perspectives that may otherwise be overlooked.
Community knowledge
People connected with patient organisations and communities can bring deep condition-specific and collective knowledge alongside individual lived experience.
Diversity matters
Meaningful partnership means seeking perspectives that reflect the diversity of people affected by rare and undiagnosed conditions, rather than hearing from the same voices every time.
Bringing your experience is enough
RarePower is about the knowledge people gain through lived experience. Previous involvement in research, committees or advocacy should not be what determines whether your perspective is valuable.
Get involved
If you have lived experience of a rare, suspected rare or undiagnosed condition—or support someone who does—you can let Rare Diseases NSW know that you are interested in hearing about opportunities to contribute.
Express your interest
Being interested in RarePower does not mean committing to every project or opportunity. It gives us a way to connect with people who may be interested when relevant opportunities for lived experience involvement arise.
Opportunities may range from providing one-off feedback through to workshops, co-design, research involvement or longer-term advisory and leadership activities.
What happens next?
RarePower is intended to connect different lived experiences with the work where those perspectives can contribute meaningfully.
Let Rare Diseases NSW know that you would like to hear about RarePower and opportunities for lived experience involvement.
As opportunities arise, we can share information about activities that may match different experiences, perspectives or interests.
You can consider each opportunity separately and choose whether the topic, timing and type of involvement are right for you.
Meaningful participation
Genuine partnership also means thinking about how people are able to participate—not simply whether they are invited into the room.
Clear about why your input is being sought
Flexible about different ways to contribute
Respectful of people's time, experience and boundaries
Accessible and responsive to different participation needs
Transparent about how contributions will be used
Focused on learning and improvement, not tokenism