Information & support

Find support

Find information, practical resources and connections to help you navigate rare and undiagnosed conditions.

Whether you are living with a rare or undiagnosed condition, supporting someone you care about, looking for services or trying to find trustworthy information, Rare Diseases NSW can help you find a useful place to start.

Find what you need

Start here

What would help you today?

Everyone's needs are different. Choose the option that feels most relevant to you right now. You can explore more than one pathway and return as your needs change.

Services & support

Finding the right care and support

Rare and undiagnosed conditions often involve different services, specialties and systems. Knowing where to look and what to ask can help you work out your next step.

Seeking answers

Diagnosis & specialist assessment

If you are still seeking a diagnosis, your healthcare team may consider whether further specialist assessment, genetics or genomics, additional testing or another referral is appropriate.

  • Ask what the next diagnostic step may be.
  • Ask whether another specialty or service could help.
  • Keep copies of important results and clinical letters.
  • Bring a summary of your history, symptoms and questions.
Remember: not having a diagnosis yet does not make your symptoms, needs or experiences less important.

Ongoing care

Clinical care & coordination

People living with rare conditions may see multiple health professionals. Clear roles, shared information and a plan for who coordinates care can make navigating this complexity easier.

  • Ask who your main point of contact is.
  • Keep an up-to-date list of your healthcare team.
  • Ask how information will be shared between services.
  • Discuss what to do if your health or symptoms change.
Helpful tool: the Rare Condition Passport can support communication of important information across healthcare settings.

Closer to home

Local & community-based care

Not every part of your care needs to happen in a specialist centre. Your healthcare team can help identify which aspects of care may be provided locally or closer to home.

  • General practice and primary care.
  • Allied health and rehabilitation.
  • Community nursing and local health services.
  • Telehealth where available and appropriate.
Ask: which parts of my care need specialist expertise, and which can safely be delivered closer to home?

Beyond healthcare

Practical, family & community support

Support may also involve everyday life, wellbeing, disability, education, work, caring responsibilities and connection with others who understand rare conditions.

  • Patient and rare disease organisations.
  • Disability and community supports.
  • Mental health and wellbeing support.
  • Support for carers, siblings and families.
Support is broader than medical care. What matters to you and your family should be part of conversations about care.

Resources & guides

Practical information for the rare condition journey

Find information and practical resources to help you prepare for healthcare, understand rare and undiagnosed conditions, support your family and navigate some of the challenges that can come with complex care.

Starting out

Rare & undiagnosed

Information for people seeking answers, newly diagnosed or trying to understand what might come next.

Navigating care

Healthcare & appointments

Tools and information to help prepare for appointments, organise health information and communicate about care.

Whole-family support

Families, carers & siblings

Resources that recognise the wider impact of rare conditions on parents, carers, siblings and family life.

Learn more

Condition guides & trusted information

Find condition-specific guides and links to reliable information from trusted rare disease sources.

Resource library

Browse all resources & guides

Visit our dedicated Resources & Guides page to explore practical information, condition-specific resources, videos, guides and tools in one place.

Explore the full collection

Browse the growing collection of resources available through Rare Diseases NSW.

Browse resources & guides

Featured tool

Keep important information ready to share

The Rare Condition Passport is designed to help communicate important information about health, care, communication needs and preferences across healthcare settings.

Explore the Rare Condition Passport

Featured tool

Rare Condition Passport

Essential information. In one place. Ready to share.

The Rare Condition Passport is a short, portable resource that helps people living with rare, suspected rare or undiagnosed conditions communicate important information about themselves, their health, care, communication needs and preferences.

Keep your Passport with you and use it when visiting an emergency department, staying in hospital, meeting a new healthcare team or whenever important information needs to be understood quickly.

  • Free to use
  • Designed to be portable
  • Adult version available
  • Child & young person version available
Explore the Passport & Toolkit Quick Reference Guide

Find connection

Looking for people and organisations who understand?

Patient organisations and rare disease communities can provide condition-specific information, advocacy, connection and peer support.

Organisations & communities

Organisations & communities

Find people who understand

Rare disease organisations and patient communities can be valuable sources of information, connection and practical support. Some focus on a particular condition, while others support people across many rare or undiagnosed conditions.

Learn

Information

Condition-specific information, practical resources, updates and guidance developed with knowledge of the community.

Connect

Community & peer connection

Opportunities to connect with other people and families who may understand parts of the rare condition journey.

Be heard

Advocacy

Many organisations work to improve awareness, services, research, policy and outcomes for their communities.

Get support

Practical support

Depending on the organisation, support may include navigation, education, events, programs or other practical assistance.

Find an organisation

Explore rare disease support organisations

Visit our dedicated Support Organisations page to find organisations and communities that may be relevant to you, your family or the condition you are navigating.

Search for support

Explore the organisations listed by Rare Diseases NSW and follow the links to learn more about the support each organisation provides.

Find support organisations

Keep exploring

Support can look different at different points in the journey

Return to the pathways above whenever your needs change. You can explore services, practical resources, the Rare Condition Passport and community support at any time.

Back to support pathways

We're here to connect

Still not sure where to start?

Rare conditions can involve many different services, systems and sources of information. If you haven't found what you need, you can connect with Rare Diseases NSW and explore ways to stay informed about our work, resources, events and community.

Start with the pathway that feels most relevant today
Return whenever your needs or circumstances change
Connect with us to stay informed and involved
If you need urgent medical care: contact your treating healthcare team or appropriate health service. In a medical emergency in Australia, call Triple Zero (000) or attend your nearest emergency department.
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