Who We Are

Metabolic Dietary Disorders Association Inc (MDDA) are the national peak consumer body dedicated to supporting, educating, connecting, and representing all individuals their families and carers living with Inborn Errors of protein Metabolism (IEpM).  

We are a patient run and led organisation that is largely voluntary based.

Our programs help support our goal of achieving positive health outcomes for all patients living with an IEpM requiring life-long metabolic dietary management skills, resources, and support.

There are more than 13 rare IEpM representing the estimated 2,500 individuals living with an IEpM in Australia and approximately 25 babies born each year. Most IEpM are screened for via the Newborn Bloodspot Screening Program or diagnosed in metabolic crisis. 

IEpM are rare genetic disorders in which the body cannot properly metabolise protein. Treatment is complex and challenging requiring severely restrictive dietary management eliminating all forms of high protein foods such as eggs, meat, dairy, nuts, legumes, protein enriched foods and most grains from the diet. 

MDDA offer specifically designed programs, products and services created to help support individuals and families navigate the pathways of managing their IEpM from newborn diagnosis throughout all life stages. These programs have been created by our dedicated team of MDDA staff and executive team of volunteers.

MDDA offers dedicated programs and services across multiple platforms through:

  • National Freecall support line, regular eNews and online newsletters
  • Annual National Family Conference
  • Outreach IEpM Patient Pathways Program
  • Adult IEpM Wellbeing program
  • PeeKabU Newborn Starter kit
  • PKU Compendium series
  • Webinars, online educational forums, cooking days, fundraising events
  • The Great Protein Challenge
  • Patient/family only forums, social media platforms including: Facebook, Instagram, Twitter and YouTube
  • Awareness campaigns
  • Government advocacy

Since 1996 we have provided a range of national support and education services for IEpM patients, their families and carers, researchers, and medical professionals. We also provide advice and information to the Australian Government to inform government policy objectives and programs.

Please explore our website, read our stories and consider joining the IEpM community – we understand the importance of being part of a caring and informed support network.

Our Vision

All individuals living with an IEM are leading a life at full potential, not limited by choice or resource.

Our Mission

The MDDA educates, connects and enables individuals and families living with an Inborn Error of Metabolism (IEM) – ensuring more informed choices and a better quality of life.

Our Goal

Achieving positive health outcomes for individuals living with inborn errors of metabolism (IEMs), and requiring life-long metabolic dietary management skills, resources and support.

Our Strategic Priorities

The long-term purpose and objectives of the association are to provide a credible, supportive service to all people affected by, and living with a dietary managed Inborn Error of protein Metabolism in Australia.

  • Educate and advise government on Health policies and decisions effecting people with IEpM.
  • Consult with health professionals to influence improved care and clinical resources for IEpM.
  • Promote cooperation and consistency of care between state-based IEM clinics and facilitate a national framework of care.
  • Provide well-informed support and advice relevant to the needs of people with an IEpM and to the needs of interested parties.
  • Assist consumers to improve their understanding of government policy and the availability of Inborn Errors of Metabolism grants and support resources and services.
  • Promote national consistency in the treatment, care, and management guidelines for IEpM.
  • Represent the needs of people with an IEpM dietary condition and their families with governments and other organisations.
  • Promote and encourage individuals to self-advocate in matters related to the condition.
  • Consult with and represent members on all matters relating to IEpM health care policy and programs and advise Government and key stakeholders accordingly.
  • Represent the national IEpM community through participation in health policy discussion papers and national advisory and consultations forums.
  • Maintain strong links with health care professionals, IEM clinicians and research communities.
  • Build relationships and share information with other health and support organisations with similar or complementary objectives.
  • Encourage community service and health/wellbeing groups to be interested in the incidence of metabolic dietary disorders in the community.
  • Collaborate with International alliances for achievement of greater IEpM care.
  • Liaise with medical food suppliers within Australia to ensure variety and continuity of specialised IEpM food options.
  • Disseminate accurate information and provide education for members regarding the management of inborn errors of metabolism, government policy and relevant healthcare information.
  • Provide tools, resources, and programmes to assist with dietary compliance, greater health and overall wellbeing.
  • Share information and improve the knowledge and understanding of specialist IEM health professionals and clinicians regarding the care and management of inborn errors of metabolism.
  • Provide regular networking opportunities and forums for the Australian IEM community to connect, share, support, develop and contribute together as a community.
  • Contribute to broader community awareness and education regarding the needs of people with inborn errors of metabolism and the needs of their families and carers.
  • Play a role educating the greater Australian community on the importance of the newborn screening programme and consult with advisory groups on its further development.
  • Maintain our position as an effective national body representing the consumers and the carers of people with an IEpM.
  • Operate as a well-managed and accountable community-based organisation.
  • Continue to involve the IEpM community in all aspects of planning and coordination of IEpM support programs and encourage personal participation and contribution.
  • Continue to maintain a diverse and active executive committee and office personnel team, seeking continuous training and development opportunities.