Interested in becoming a member of the Metabolic Dietary Disorders Association?
Join the peak Australian Inborn Error of Metabolism (IEM) organisation and access the latest resources and information; connect, network and share ideas with others through education and other events, or as part of our online community.
MDDA News is a printed newsletter that is posted to all members and through specialist metabolic units throughout Australia. It provides useful dietary information as well as patient stories, event information, Govt support services etc. Newsletters often include inserted product information sheets and order forms, as well as event invitations and surveys etc. MDDA e-news is a more frequent email newsletter sent to subscribers providing direct links to key online resources and information, including surveys, research studies, Government discussion papers and consultation forums etc.
Brochures & Kits
- Information brochures are used to develop awareness and provide support and advice.
- Factsheets are used to focus on particular topics / or interest groups.
- New parent/member kits are provided to all new members.
The website allows MDDA to share information from:
- Professionals; provide technical information in ‘layman-terms’ to enable ease of access by individuals and newly diagnosed families.
- Commercial providers; provide information about food products and how they may be obtained.
- Governments; provide accurate information about benefits, support and services provided
- Members; share stories and experiences and provide peer support and mentoring.
- MDDA; provide information on upcoming events, activities, and discussion forums and coordinated volunteer projects.
Dietary management resources include:
- Online recipe catalogue
- Online product catalogue
- Printed Recipe book (& inserts)
Future plans are underway for additional resources including a dietary app and meal planner tool.
News & Forums
MDDA’s social media channels and online news feeds keep members and key stakeholders informed about latest information, news and resources. The MDDA member only forums are facilitated via the MDDA Facebook Groups. MDDA keeps media and all stakeholders informed of any breaking news.
Telephone contact for parents and individuals which provides a first place empathetic contact with people with similar experiences to the caller. A tollfree number is available for members use.
LINK Referral Network and Personal Visits
The MDDA LINK Network provides individuals with a person to call on (or be called upon) to obtain one on one support, information and advice, This is particularly important during early diagnosis when often parents experience feelings of uncertainty and being overwhelmed with information and emotion. Personal visits to families and individuals are sometimes used in a time of need, and the MDDA national LINK network provides a co-ordinated approach to this – ensuring suitably selected and briefed outreach persons are involved. MDDA LINK representatives are informed on latest Government policy and available healthcare services, to be able to assist and advise newly diagnosed families on available services and resources.
Peer Mentoring Program
The MDDA Peer Mentoring program provides psychosocial support to patient cohorts that are particularly vulnerable to compliance issues due to the nature of their circumstances.
The targeted groups are:
- Adolescents (ages from 10 to 21 years): research shows that this group is particularly vulnerable to compliance due to the restrictive nature of the dietary treatment program and the impact this has on their psycho-social functioning.
- Maternal PKU: due to the detrimental impact of increased levels of phenylalanine to the unborn child of a mother with PKU, females who are contemplating having a child, or are expectant of a child require extra support to ensure they maintain a particularly restrictive dietary program.
- Parents of newly diagnosed children: due to the unfamiliarity of the restrictive treatment program, and the severe negative implications of non-compliance on the newborn’s development in their early years, peer support is highly valuable for optimal health outcomes for both parent and child.
- Individuals and families affected by a rare form of an inborn error of metabolism: due to the rarity of some disorders, and the geographical spread of the patient group, psychosocial support can be difficult to obtain.
- Trained and experienced volunteers who are living with an inborn error of metabolism deliver the Program. Referrals are made to the Peer Mentoring Program Supervisor via the Metabolic Clinics in each State. The Peer Mentoring Program Supervisor monitors and provides support to all Peer Mentors, to ensure the strict guidelines are adhered to, and additional professional support is provided as required.
Educational and networking events are held in different locations around Australia on a regular basis. These provide forums for information exchange for all involved and interested in the treatment of inborn errors of metabolism usually related to specific or general diagnostic issues.
- Seminars relating to health and family issues.
- Conferences for health professionals to consider specific issues.
- A forum to exchange information and address specific issues relevant.
- Discuss and provide input on latest Government policies.
- Educate and update the skills of individuals and their families affected by an inborn error of metabolism for greater health and wellbeing outcomes.
- Develop and strengthen peer mentoring relationships.
Social Functions / Cooking days
Social functions are used to establish friendships and build informal networks to allow members to share and learn from other members. Cooking days are also encouraged to enable cross sharing of dietary information and meal planning and ideas.