MDDA Events

PKU Carer’s Compendium Launch 2020

MDDA’s Patient Pathways Program is an outreach support system that provides support, mentoring, educational programs and resources for individuals and families living with an IEM throughout every step of their journey. The Pathways Program includes different initiatives and programs that support those with an IEM through every stage of life – from first diagnosis to childhood to adulthood.

PKU Carer Compendiums

As part of the Pathways Program, MDDA has been working in collaboration with Royal Melbourne Hospital ,and various Industry supporters, to create PKU Carer Compendiums. These Compendiums are for late diagnosed PKU adults to be utilised by their carers.

PKU Carer’s Compendium Launch

WHEN: Tuesday 11th August
TIME: 1:30pm AEST
WHERE: Online, via your computer or laptop

WHAT: MDDA is hosting this virtual event with the participation of National PKU Adult clinics across Australia. Introducing the new Carer’s Compendium (which will be posted to you upon registration prior to the event), you will learn how this resource can be used as an essential tool in the PKU care you provide.

RSVP: Please Click Here to sign up to the program and RSVP to the Virtual launch by July 27th. If you are unable to participate in the launch, please still sign up so we can still send you your compendium.

What will happen during the Launch?

The Launch will start at 1:30pm AEST sharp.

You are encouraged to join 10-15 minutes earlier to ensure your technology is working and familiarise yourself with the site and program. You should join with your PC or laptop camera and audio on so that you can participate in the interactive sessions after the main presentation. Please have your recently received compendium on hand.

The launch will run from 1.30pm-3.30pm and include:

1:30pm – 2:30pm – Program and Compendium Launch

  • A live webinar on the compendium, presented by Royal Melbourne Hospital Professor Gerard de Jong and Dietitian Anne-Marie Desai,
  • Live webinar on the PKU peer support program, presented by MDDA Patient Pathways Telehealth Nurse Jo Campbell,
  • State/Region based clinical discussion breakout groups

2:30pm – 3:30pm – PKU Playground

Following from the launch, you are invited to explore our online Low Protein Food showcase and speak to the suppliers on hand to answer any questions. You can also join in on our special interest ‘speed chats’ to find out more on:

  • Guthrie Card/Finger Prick testing
  • Label counting for PKU
  • Dietary tips & meal planning for PKU
  • “An Adult Patient’s Perspective” – benefits of returning to diet
  • IEM Food grant
  • MDDA – Patient support services

Please RSVP for the event before the 27th July so that it gives us plenty of time for us to send you a physical copy of the Compendium.

To register for the event click here.