The MDDA is a self-help, not-for-profit, support group that was set up in 1996 to assist members and their families with the complex issues in dealing with metabolic dietary disorders such as PKU, MCAD, MMA and MSUD.
The MDDA is a registered charity, membership is Australia-wide and includes families from countries around the world. This site aims to provide a comprehensive resource for those with an inborn error of metabolism that is partially controlled by medically prescribed diet. The MDDA committee are not medical professionals. We are Australians from a variety of backgrounds who have had personal experiences in dealing with an inborn error of metabolism.
MDDA exists to share the day to day living issues of living with a metabolic disorder, an area of expertise itself. The MDDA recognises and celebrates the achievements of individuals and groups that make a difference in people's lives affected by a metabolic disorder. The MDDA is recognised by the Federal Government as the key organisation to support individuals and groups with metabolic diagnoses through a co-operative volunteer network.
The vast majority of MDDA members have an inborn error of protein metabolism. As PKU is the most common disorder there are MDDA PKU representatives in each state. For the rarer disorders there are national disorder representatives. The MDDA welcomes other people and groups of IEM to become members. The newsletter and website currently reflects the state of the knowledge base of most members, and we welcome input and suggestions from others so we can continue to grow and represent equitably those with other IEM's.
The MDDA will continue it's commitment to all Australians with IEM's in working with the Federal Government, with whom we already have strong, positive links. The MDDA also hopes to work with state groups, other organisations and government representatives to help educate the relevant departments or clinics about treatments or policies that differ state by state. Our primary focus, as always, will be to help educate and assist families in the improved management of these extremely complex conditions. The MDDA continues to expand it's knowledge and member base. We pride ourselves on being an extremely inclusive group and we welcome input, feedback and suggestions from all interested parties. If you have experiences and ideas to share, a skill, or just a commitment to hard work and enthusiasm, please don't hesitate to contact us to discuss your ideas and ways you can help. Just by joining the MDDA you can show your support. The MDDA has a majority membership and understanding of inborn errors of protein metabolism. We do hope to gain a better understanding of inborn errors of fat or carbohydrate metabolism.
For further information about the organisational structure of the MDDA and the committee of management.
Metabolic Disorders are usually grouped according to the type of food that cannot be broken down properly. Hence you may have heard your child's condition described as an Inborn Error of Protein/Fat/Carbohydrate Metabolism.These lists are not complete
Metabolic disorders are genetic conditions, usually inherited as a recessive trait from both parents (meaning both parents carry the gene and all their children will have a one in four or 25% chance of inheriting the metabolic disorder). Most parents do not know they are carriers and the diagnosis of a baby or child with an IEM usually comes as a huge shock to the family. Diagnosis usually occurs because the newborn has been identified through the "heel prick test", taken within 72 hours of birth.