Global PKU Patient Conference One World, One Vision 11th September 2021 Event features include: Live and pre-recorded sessions, Panel Q&A discussions, Chatrooms, Virtual scientific showcase, 1on1 chats with scientists and researchers, plus our Patient Connect Lounge! The first of its kind event, bringing the PKU patient community together virtually from around the globe. Together we
MDDA August Update Last night we held another MDDA Update, presented by MDDA President and PKU Mum Monique Cooper. It included an update of everything we have done in the last month but also showcased the events we have coming up on the Hub! Watch the video below and make sure you stay tuned for
MDDA July Update Last week MDDA Vice President Louise Healy gave an update on what we have been doing with our new inclusion and interactive virtual platform MDDA Connect Hub. Watch the video below for a summary of the virtual events that we have already held on the hub as well as the upcoming events
We’ve made the difficult decision to postpone the MDDA Family Retreat for 2021. While we know this is disappointing, we hope you can understand our obligations and responsibilities that we must consider to help keep all attendees, presenters, volunteers and staff safe during the pandemic. We’ve also considered the potential impact and effect that a
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!