Like many rare diseases, it is a characteristic of Phenylketonuria that the general public is not sufficiently informed on the disorder and the needs of patients. This is despite the majority of Australians being tested for the disease in the early days of their lives via the newborn screening heel prick test.
The concept of an International PKU day was initiated from a ESPKU delegates meeting in Antwerp back in 2013, with today's date being the birthday of two stalwarts of PKU, Robert Guthrie (1916-1995) and Horst Bickel (1918-2000). The aim of International PKU Day is to make living with PKU more visible in the community.
To assist with the visibility of our cause, a newly created logo was created in light blue, green and dark blue. The belt around the globe symbolises the world-wide solidarity of PKU patients and their desire for public perception. Our plan for celebrating International PKU Day is to share with you some of the wonderful initiatives our members are undertaking to improve the lives of those with PKU. The message is clear - participation in bringing Awareness of PKU to the public is delivering results. The more members we have increasing the Awareness of PKU throughout Australia, the better lifestyle we create for those living with PKU.
There are many awareness events held throughout the year in Australia. Keep an eye on our website and facebook pages and let us know if you can attend or would like to hold your own awareness event.