The MDDA 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.
MDDA Patient Pathways Coordinator and Tele-heath Nurse
Within this program, MDDA provides a specialist tele-health nurse which provides patients with access to a coordinated comprehensive case management service, to talk about their experiences and collect a repository of patient experience data that can inform future research, treatment, care, information and support across the health sector. Our nurse is provided through a federally funded government initiative developed by the Centre for Community-Driven Research (CCDR) which aims to increase the capacity of patient organisations to help patients navigate the health system and access all services that are available to them, including clinical trials.
If you want to book a consultation with MDDA’s Tele-health nurse,
call 03 9723 0700 or
email [email protected].
Please note this program will not provide treatment advice. The main objective is to develop tailored care plans, provide practical and emotional support, education and connection with existing services.
MDDAs Member Advantage Patient Pathways Program privileges include:
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Our PeeKabU Kids Club welcomes all kids 0-12 years old) with protein IEM’s to make them feel part of an inclusive, supportive and fun community of friends. Our PeeKabU kids are always encouraged
to put their best foot forward and feel supported as they navigate being a growing kid with an IEM.
PeeKabU newly diagnosed starter bags are provided to parents of PKU and other IEM babies. These bags contain education materials, infant accessories and a newborn IEM baby diary to help new parents through the early months. These bags are provided as a gift from MDDA to new parents.
Bags and resources for other kids ages are coming soon!
Our PeeKabU Kids Club welcomes all kids 0-12 years old) with protein IEM’s to make them feel part of an inclusive, supportive and fun community of friends. Our PeeKabU kids are always encouraged
to put their best foot forward and feel supported as they navigate being a growing kid with an IEM.
PeeKabU newly diagnosed starter bags are provided to parents of PKU and other IEM babies. These bags contain education materials, infant accessories and a newborn IEM baby diary to help new parents through the early months. These bags are provided as a gift from MDDA to new parents.
Bags and resources for other kids ages are coming soon!
Our PeeKabU Kids Club welcomes all kids 0-12 years old) with protein IEM’s to make them feel part of an inclusive, supportive and fun community of friends. Our PeeKabU kids are always encouraged
to put their best foot forward and feel supported as they navigate being a growing kid with an IEM.
PeeKabU newly diagnosed starter bags are provided to parents of PKU and other IEM babies. These bags contain education materials, infant accessories and a newborn IEM baby diary to help new parents through the early months. These bags are provided as a gift from MDDA to new parents.
Bags and resources for other kids ages are coming soon!
Our PeeKabU Kids Club welcomes all kids 0-12 years old) with protein IEM’s to make them feel part of an inclusive, supportive and fun community of friends. Our PeeKabU kids are always encouraged
to put their best foot forward and feel supported as they navigate being a growing kid with an IEM.
PeeKabU newly diagnosed starter bags are provided to parents of PKU and other IEM babies. These bags contain education materials, infant accessories and a newborn IEM baby diary to help new parents through the early months. These bags are provided as a gift from MDDA to new parents.
Bags and resources for other kids ages are coming soon!
Our LowProTeens program is designed to provide a structured framework and support network both for IEM parents and teens, building independence and working through the transition stages of tweens to adult.
Our LowProTeens program is designed to provide a structured framework and support network both for IEM parents and teens, building independence and working through the transition stages of tweens to adult.
In addition to our Zest Vitality program, MDDA is developing programs that will provide further support for our IEM adults. For further information on the process of these, please visit the MDDA website.
In addition to our Zest Vitality program, MDDA is developing programs that will provide further support for our IEM adults. For further information on the process of these, please visit the MDDA website.
MDDA, in collaboration with Royal Melbourne Hospital and various Industry supporters, has created PKU Carer Compendiums for late diagnosed PKU adults to be utilised by their carers. MDDAs Patient Pathways coordinator is also on hand to support and assist carers with information and support or to connect them in with an MDDA LINK volunteer to assist them with any low pro cooking tips or advice. (Please note; sponsored memberships are available for carers of late diagnosed PKU patients)