News

Disability Information Hotline

Do you have a disability? Have things changed for you because of coronavirus (COVID-19)? Do you need support in a language other than English? Help is available. Call the Disability Information Helpline on 1800 643 787 and ask for an interpreter, or call Translating and Interpreting Services on 131 450 and ask for the Disability

MDDA Update – LP Product Supply and Coronavirus

No Change – Due to the Stage 4 restrictions introduced in Victoria, MDDA have been in contact with each of the suppliers of medicines, supplement/formula prescription products and low protein food suppliers for an update. The companies have advised that there are no current stock supply issues or perceived shortages. The companies will restrict orders

Centre of Community-Driven Research releases report on the impact of COVID-19 on health charities in Australia

This year has been like no other for the MDDA. COVID-19 has put an enormous strain on our resources following the devastating drought, fires and floods. Like other Australian health charities supporting patients with chronic, complex care needs, we have seen an impact on both our financial and volunteer resources. The Centre of Community-Driven Research

Celebrating International PKU Day 2020!

Yesterday, June 28th, was International PKU Day! We hope you spent some time celebrating all the great aspects of PKU that make you, YOU! Did you know? : – Robert Guthrie, the inventor of the newborn screening test, was born June 28th, 1916 – Horst Bickel, the first to develop a low protein diet, was

Phase 2 of Clinical Trials for MMA and PA Treatment Approved in America

MDDA would like to congratulate HemoShear Therapeutics who have received approval to go into phase 2 of their clinical trial for the treatment of patients with methylmalonic acidemia (MMA) and propionic acidemia (PA). This is very exciting news and we would like to say thank you on behalf of all of the Australian Families for

Update of MDDA Advocacy for Future Treatments

For the past 8 years MDDA has been proactively seeking subsidised access to new therapies for all PKU patients including adults. We advocated strongly for this during the last PBAC submission for BH4 by insisting adults be included in the submission and then ensuring we had adult representatives attend consumer meetings with the PBAC. Unfortunately,

2020 MDDA Family Retreat Postponement Details

ANNOUNCEMENT: MDDA Family October Retreat QLD – Postponed to April 2021 After months of deliberation we have decided to postpone the 2020 National MDDA Family Retreat that was set to take place this year at the beautiful Sanctuary Cove in October. As much as we would love to proceed with the event as planned, our

Daily Shoppers ‘Community Hour’ for Healthcare Cardholders – Update

Grocery Shopping – Update Coles and Woolworths have introduced a dedicated Community Hour for at-risk customers. Beginning at Coles on 26 March and at Woolworths on 30 March, the stores are open only to the elderly and vulnerable members of the community from 7am to 8am on Mondays, Wednesdays and Fridays, and to emergency services and healthcare workers

Supply – formulas, supplements, low protein products and medicines update

MDDA understand that recently there has been some serious concerns with getting supply of supplements during these uncertain times. We have spoken to all of the suppliers again today, they have advised that there are no shortages of supplements/products/medicines. There is enough product available for everyone who needs them if we all continue to order

A $750 one off Economic Support Payment for those with Carer Allowance

As part of the Government’s response to Coronavirus (COVID-19) they are paying $750 one off Economic Support Payment for those living in Australia. You don’t need to do anything, as they will pay you automatically. You’ll get the money from 31st March with most getting it by 17th April 2020. Eligible payments include: Age Pension Disability

MDDA Coronavirus (COVID-19) Advice Resource

The health and wellbeing of the IEM community is our absolute priority and we are continuing to monitor the most up to date information on Coronavirus (COVID-19). We have had many questions regarding how this virus may affect those living with an Inborn Error of Metabolism, particularly with issues in obtaining food and medical supplies.

MDDA Update – LP Product Supply and Coronavirus

MDDA have contacted each of the suppliers of medicines, supplement/formula prescription products and low protein food suppliers. The companies have advised that there are no current stock supply issues or perceived shortages. The companies will restrict orders to usual quantities to ensure the supply remains as normal. We understand the concern regarding the risk of