Our Community
Rare Diseases: Support within the Community

Menarini Australia is proud of its commitment to supporting the treatment of rare diseases through the provision of highly targeted drugs that assist just a handful of patients.

We also support patients through our relationships with MDDA (The Metabolic Dietary Disorders Association) and Rare Voices Australia.

MDDA is a national self-help group supporting people affected by genetic (inborn) errors of metabolism. MDDA’s aim is to offer families a comprehensive resource of information and support.  MDDA provides members and their families’ forums to share experiences and information, to educate themselves and the general community about living with an inborn metabolic dietary disorder.1

To learn more about MDDA visit www.mdda.org.au.

Rare Voices Australia is Australia’s national organisation advocating for those who live with a rare disease. World Rare Disease Day, celebrated each year on the last day of February – a rare day -, raises awareness about rare diseases and the impact on those affected personally and their families.2

To learn more about rare diseases visit Rare Voices Australia www.rarevoices.org.au.

The text message that changed a life

In July 2013, a member of our Menarini Australia team received an after-hours text message from a clinician confirming the diagnosis of a particularly rare condition that affects less than 20 Australian children.

With none of the required treatment in stock, the next 24 hours proved a race against time to locate, order and arrange express shipment of the medicine to the hospital where the seriously ill patient had been admitted. Ordinary delivery would take too long and any delay could have serious consequences for the child.

With some quick thinking from our team members and working closely with the clinician, the hospital and logistics, the drugs arrived at the hospital the very next day resulting in the patient being able to be treated and potentially, a life saved.

All external hyperlinks have been shared to provide further information, but are not intended as advice. Any information provided on this site or in these links should be discussed with your healthcare professional and does not replace their advice.

 

  1. Metabolic Dietary Disorders Association (MDDA) mdda.org.au (accessed on 22 Sept 2021)
  2. Rare Voices Australia (RVA) rarevoices.org.au (accessed on 22 Sept 2021)