About the MDDA IEpM Exchange Forum 

The inaugural MDDA IEpM Exchange forum is a multi-stakeholder event bringing together the Inborn Errors of protein Metabolism (IEpM) community, including healthcare professionals (HCP’s), patient representatives, and industry stakeholders.  

This unique gathering aims to foster collaboration and advance patient-centred care, improving outcomes for individuals living with IEpMs. 

The forum is purposefully aligned to take place the days prior to MDDA’s annual family retreat (which takes place the weekend of 21-23 November), creating a unique opportunity to build deeper connections between healthcare providers and the patient community across Australia and New Zealand. 

Purpose of the Forum 

This conference seeks to: 

  • Highlight opportunities for care advancement through IEpM patient perspectives. 
  • Promote best practices in IEpM treatment and support. 
  • Develop strategies for improved patient pathways and access to care. 
  • Explore advancements in tools and resources for patient-centred care. 
  • Provide educational and networking opportunities for healthcare professionals, patient leaders, and industry stakeholders.  

MDDA IEpM Exchange builds on MDDA’s strong foundation of community-driven initiatives, with insights from the 2025 “Advancing Patient Centre Care” IEpM Patient Survey helping to shape and inform the agenda. 

Building a Collaborative Agenda 

Healthcare professionals will be invited to contribute topics for the agenda and are encouraged to take part in the IEpM Showcase. There will be opportunities to present updates on current research, clinical trials, and patient-centred initiatives—both during the main forum and as part of the Family Retreat program. 

Program Highlights

View Full Program Here
The program has three key components: 

(Weds evening to Thurs morning) 

We invite each clinic to send 1-2 clinic network representatives to attend our dedicated patient support collaboration meeting, held as part of our broader program to strengthen partnerships between all state-based Metabolic Clinics and the MDDA. 

This Executive Dinner and Meeting will discuss how MDDA and expert clinicians/researchers can collaborate more effectively to support patients for better outcomes.  Attendees will be invited to suggest topics and MDDA have identified the following keys topics: 

  • Define engagement and communication pathways between MDDA and scientific and medical expertise (e.g ASIEM) 
  • Identify aligned advocacy and care priorities and agree on roles and strategy 
  • Discuss access to health technologies including collecting patient evidence to inform HTA decisions making 
  • Share MDDA advocacy priorities and opportunities to work together to address these priorities. 
  • Discuss research, needs, gaps and priorities including equitable access to clinical trials. 
  • Share MDDA Link programs and resources and discuss how these can complement clinical care 

Your insights and experience are critical to shaping this collaboration. We look forward to working alongside you to strengthen outcomes and deliver greater support for the patients and families we all serve.

All other attending HCP’s are encouraged to arrive early Thursday morning with the main forum sessions taking place from 11am on Thursday through to 4pm on Friday. Including Dinner and one night’s accommodation on Thursday evening, and optional attendance at the MDDA family retreat scientific patient presentations on Friday (to present or attend).

HCPs are welcome to depart after the forum concludes on Friday afternoon, or stay on and participate in the Family Retreat program—from Friday evening through to Saturday afternoon or stay also until  Sunday. A limited number of funding options are available for extended stays, but we kindly ask that additional participation be self-funded where possible. 


Engaging Industry  

Industry sponsors play a pivotal role in supporting the forum and engaging with healthcare professionals and patient leaders. Sponsors will host an IEpM Showcase as well as attend invited sessions throughout the forum. MDDA will be encouraging an open collaborative approach during these sessions and industry sponsors will have the ability to contribute educational topics for inclusion on the agenda (with criteria and guidelines to ensure suitability and educational value). 

MDDA will be working directly with ASIEM to ensure an insightful agenda is created to benefit all in attendance with an emphasis on education and patient centric insights & care. 

This collaborative approach ensures meaningful dialogue and shared strategies to improve outcomes for individuals living with IEpMs. 

For further information or to provide feedback, please contact: 
Email: [email protected] or [email protected]  
Phone: 03 9723 0600

MDDA IEpM National Forum FactsheetDownload Here

We look forward to welcoming you and working together to shape patient-centred care for the IEpM community!  

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