Education & learning

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Build knowledge. Learn from experience. Improve rare disease care.

Explore practical education, learning and resources designed to build knowledge of rare disease, strengthen person-centred care and support the translation of learning into practice.

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Online learning

Rare Disease 101 Australia

A free e-learning module introducing Australian health professionals to rare disease and how they can best care for individuals and their families.

Free e-learning

Build the foundations of rare disease care

Designed for Australian health professionals.

Rare Disease 101 Australia introduces the challenges experienced by people living with rare conditions and provides practical learning relevant to everyday healthcare.

Format Online e-learning
Cost Free
Audience Australian health professionals
CPD RACGP CPD approved
Explore Rare Disease 101 Australia

What you’ll learn

Rare disease knowledge for everyday practice

The module introduces key areas of rare disease care, from diagnosis and communication through to coordinated care, advocacy, research and new therapies.

  • Common challenges
  • Mental health & wellbeing
  • Respectful & effective communication
  • The diagnostic odyssey
  • Genetic & genomic testing
  • Coordinated care
  • Patient advocacy groups
  • Research & new therapies

Collaborative learning

Rare Disease Project ECHO

Learn with a multidisciplinary community through case-based discussion, shared experience and practical conversations about rare disease care.

Learn together

Bring real-world rare disease care into the conversation

Case-based learning that connects people across disciplines and services.

Rare Disease Project ECHO creates a space for shared learning around the complexities of caring for people living with rare and undiagnosed conditions.

Rather than learning in isolation, participants can explore cases, hear different perspectives and build knowledge through discussion with a multidisciplinary community.

Explore Project ECHO

Learn from experience

Explore practical issues arising in rare disease care rather than learning only through theory.

Connect across disciplines

Hear perspectives from people working across different areas of health, care and rare disease.

Build a learning community

Develop connections and shared knowledge beyond a single session or individual area of expertise.

International qualification

European Board Examination in Essentials of Rare and Undiagnosed Diseases

An international examination developed through the Union Européenne des Médecins Spécialistes (UEMS; European Union of Medical Specialists) European Board of Rare and Undiagnosed Diseases (EBRUD) to assess core knowledge and competencies in recognising, diagnosing and coordinating care for people living with rare and undiagnosed diseases.

European Certificate · EC RUD

A benchmark for expertise in rare and undiagnosed diseases

The examination aims to establish a standardised benchmark for medical professionals working with rare and undiagnosed diseases. It focuses on the knowledge and competencies needed to recognise rare disease red flags, investigate possible diagnoses and organise appropriate care pathways.

Successful candidates receive European certification and join the professional community associated with the UEMS European Board of Rare and Undiagnosed Diseases (EBRUD).

  • Validate knowledge and competencies in rare and undiagnosed diseases
  • Support ongoing professional development
  • Join an international rare disease professional community
  • Contribute to more consistent standards of rare disease care
Exam information Registration

Who can apply?

Open internationally

The European examination system is open globally, so eligible candidates do not need to be based in Europe.

  • Candidates must hold a medical degree such as an MD, MB ChB or MBBS-equivalent qualification.
  • Applicants must provide evidence of active involvement in the care of people living with rare diseases.
  • Training should align with at least 80% of the current European Training Requirements for Rare and Undiagnosed Diseases.
  • Eligibility documentation is reviewed as part of the examination admission process.
Please note: Rare Diseases NSW is sharing this external professional development opportunity for information. The examination is administered by the relevant UEMS/EBRUD bodies. Eligibility, fees, dates and examination arrangements should be confirmed directly with the organisers before applying.

Practical toolkit

GeneEQUAL Toolkit

Practical resources to support more inclusive genomic healthcare and communication with people with intellectual disability.

Inclusive genomic healthcare

Make information easier to understand, discuss & use

Supporting people with intellectual disability to be included in conversations about their genomic healthcare.

The GeneEQUAL Toolkit brings together practical resources that can support healthcare professionals when communicating and working with people with intellectual disability in genomic healthcare.

Use the Toolkit to strengthen inclusive communication and support people to be involved in conversations and decisions about their health.

Explore the GeneEQUAL Toolkit

Lived-experience learning

Mental Health Case Studies

Learn from lived experience and explore the mental health and wellbeing impacts that can accompany living with a rare disease.

Learn from lived experience

See beyond the physical impacts of rare disease

Mental health and wellbeing are part of the rare disease experience—and part of providing holistic care.

These resources use lived-experience case study videos to highlight some of the mental health and wellbeing impacts associated with living with a rare disease.

They provide an opportunity to listen to people’s experiences and consider how health professionals can recognise and respond to mental health and wellbeing needs as part of care.

Explore the case studies

Think beyond the diagnosis

Understand the wider experience of living with rare disease

Rare disease can affect much more than physical health. The resources encourage consideration of the broader emotional and psychosocial experience of people and families.

  • Recognise the effects of ongoing uncertainty
  • Understand experiences of isolation and stigma
  • Consider the impact on families and carers
  • Identify information, resources and support pathways

Listen to lived experience

Hear directly about experiences that may not be visible during a routine clinical interaction.

Recognise the whole person

Consider emotional wellbeing alongside physical health, diagnosis, treatment and care.

Connect people with support

Explore information and support pathways that may help people living with rare disease and their families.

Professional learning

Practical Medical Genomics

Build practical knowledge of genomics and its application in healthcare through professional learning offered by UNSW Medicine & Health.

Genomics in practice

Build confidence in genomic medicine

Develop knowledge that can help connect genomic science with clinical practice.

Practical Medical Genomics provides an opportunity to strengthen understanding of genomic medicine and its application in healthcare.

For people working in rare disease, genomics is particularly relevant to understanding diagnosis, testing and the rapidly evolving possibilities of genomic healthcare.

Professional learning UNSW Medicine & Health
Explore Practical Medical Genomics

From science to healthcare

Strengthen your understanding of genomic medicine

Genomics is increasingly relevant across healthcare. Developing genomic knowledge can help health professionals engage with testing, diagnosis and genomic information in clinical practice.

  • Genomic concepts & terminology
  • Genetic & genomic testing
  • Interpreting genomic information
  • Applying genomics in healthcare

Understand the science

Build foundational knowledge that supports conversations about genomic testing and genomic medicine.

Apply it in practice

Connect genomic knowledge with the practical questions that arise in healthcare.

Keep learning

Develop knowledge in an area of healthcare that continues to evolve as genomic technologies and their applications advance.

Keep exploring

More learning & information

Continue exploring trusted rare disease, genetics, genomics and inclusive healthcare information through these additional resources.

Inclusive genomic healthcare

GeneEQUAL

Explore the broader GeneEQUAL initiative and resources supporting equitable, accessible and inclusive genomic healthcare for people with intellectual disability.

  • Inclusive genomic healthcare
  • Accessible communication & information
  • Resources shaped by inclusive research
Explore GeneEQUAL

Genetics & genomics education

Centre for Genetics Education

Explore accessible information and educational resources about genetics, genomics, genetic conditions and genomic healthcare.

  • Genetics & genomics information
  • Educational resources
  • Information relevant to genomic healthcare
Explore Genetics Education

Rare disease information

RarePortal

An Australian rare disease information hub bringing together resources for people living with rare disease, families, carers and health professionals.

  • Rare disease information & resources
  • Information for people, families & carers
  • Resources for healthcare professionals
Explore RarePortal