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. 


Funding Options – Healthcare Professional (HCP) 

To encourage a broad HCP attendance (from all multi-disciplinary IEpM fields), MDDA will be offering flexible funding options for all IEpM clinics, with a combination of the following packages on offer: 

• Fully Funded: Flights, accommodation (1 or 2 nights), transfers, and registration. 

• Partially Funded: Accommodation, transfers, and registration (for those either locally based or with access to supplementary travel funding and/or wishing to extend available clinic funding to additional colleagues to be able to attend). 

• Additional Registrations: Available for a subsidised price, for those wishing to attend in part or in addition to MDDA funding available to each clinic for both the forum and the retreat. 

MDDA request each state-based clinic (paediatric & adults) to consider having at least 1-2 representatives (3-4 for larger clinics) to attend, so we can ensure diverse and multi-disciplinary representation across the IEpM community. We will work individually with each clinic to advise what funding is available and determine how we can best achieve this. 

If you or your clinic has access to travel or education budgets, we kindly ask that these be used where possible to allow grant funds to support others. 

To strengthen connections between healthcare teams and the patient community, MDDA is offering subsidised packages to support HCPs who wish to stay on for the MDDA Family Retreat. We hope to see representatives from all state-based clinics join us for this inclusive, family-focused weekend. 

Building a Collaborative Agenda 

View Full Program Here

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

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.) 

Other delegates (travelling afar or from WA, NZ may also arrive on Wednesday and join us for dinner). 

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). Those travelling further may request Wednesday evening arrival and join us for dinner. 

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. 

Next Steps

We welcome your feedback on the proposed forum dates, format, or program ideas. Please get in touch during our planning phase so we can incorporate your input. 

Expressions of Interest are now open until 23rd May 2025, so please have your clinic representative complete this form online prior to this time.

Complete EOI Form Here


For further information or to provide feedback, please contact: 
Email: [email protected] or [email protected]  
Phone: 03 9723 0600 (or Monique directly on 0414 734 061) 

MDDA IEpM National Forum FactsheetDownload Here

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