2021 MDDA Family Retreat Postponement Details
ANNOUNCEMENT: MDDA Family October Retreat QLD – Further Postponed to July 2021 After months of deliberation we have decided to further 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…
MDDA @Home Retreat Video Snapshot
The MDDA @Home Retreat took place October 10th-11th. Our first virtual event was a HUGE success and we can’t wait to hold more virtual events in the future. Click below to check out everything that happened at the MDDA @Home Retreat 2020!
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 born June 28th, 1918…
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,…
MDDA Family October Retreat QLD – Postponed*
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…
Newsletter Archives
Browse through our library of previous MDDA Matters printed newsletters and click on the image to read or download