MDDA is thankful to the Welk Family for organising a fundraiser on behalf of MDDA on Rare Disease Day. Their daughter Tilly is a two year old with PKU. If you would like to contribute to the fundraiser click here! MDDA thanks them again for all of their support!
On 28 February 2021 MDDA join many other global organisations, individuals and families to celebrate International Rare Disease Day. The theme for Rare Disease Day 2021 is ‘Rare is MANY, Rare is STRONG, Rare is PROUD’. We celebrate this day and reflect on the strength of every Australian living with rare genetic disorders known as Inborn Errors
MDDA extend our most heartfelt congratulations to Dr McGill who was awarded Member (AM) in the General Division in the Australia Day honours for significant service to metabolic medicine, to biochemical genetic pathology, and to medical education. Without hesitation MDDA were proud to provide a reference for Dr McGill’s nomination. Dr. McGill is a worthy
The Metabolic Dietary Disorders Association is extremely pleased with the decision of the Pharmaceutical Benefits Advisory Committee (PBAC) to recommend the listing of Kuvan (sapropterin dihydrochloride) on the Pharmaceutical Benefits Scheme (PBS) for maternal women living with phenylketonuria (PKU). The PBAC noted there is a high clinical need in a small patient population, and acknowledged the input received from individuals, organisations
PBAC Kuvan Deferral for maternal women with PKU The Metabolic Dietary Disorders Association recognises the decision by the Pharmaceutical Benefits Advisory Committee (PBAC) to defer the listing of Kuvan (sapropterin hydrochloride) on the Pharmaceutical Benefits Scheme (PBS) for maternal women living with phenylketonuria (PKU). We understand that the PKU community may feel disappointed by this decision, however,
MDDA Christmas Office Hours The MDDA Office is taking a break from the 21 December to 8 January 2021. For the remainder of January our office hours will be reduced. Supplier Christmas Trading Hours Vitaflo Vitaflo Australia will be closed from Wednesday 23rd December 2020 and reopening on Monday 4th January 2021. Last orders to
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
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!
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
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
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