Werribee Mansion Lights Up For Rare Disease Day

Werribee Mansion will light up for one night only to raise awareness for people living with a rare disease.

Wyndham City will recognise Rare Disease Day on February 28 by lighting up the exterior mansion walls in the Rare Disease Day colours; pink, green and blue.

Wyndham City Mayor, Cr Adele Hegedich said it was important to raise awareness amongst decision-makers and the general public around rare diseases and the impact of rare diseases on peoples’ lives.

“Building awareness of rare diseases is important because one in 20 people will live with a rare disease at some point in their life,” Cr Hegedich said.

“Despite this, there is no cure for the majority of rare diseases and many go undiagnosed.”

“Recognising this day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases.”

“In 2013, my brother suddenly became sick and was found to have adult late onset Ornithine Transcarbamylase Deficiency or OTC, a rare disease which affects around one in every 80,000 people.”

 “A lack of knowledge around rare diseases people means people like my brother are misdiagnosed and end up suffering life changing consequences”

“Often the issue with rare diseases is that people find out they have a rare disease from a trigger rather than knowing they have it earlier on in life, and when this happens it is often too late.”

 “It was a late trigger of his rare disease that caused my brother to acquire a brain injury at the age of 24.”

“There are other people in our community who have a rare disease and we should all be banding together.”

 “We need to support people who have experienced a rare disease and recognise that the impacts can be severe and can include brain injury and disability.”

First celebrated on 29 February as it is a Rare day, Rare Disease Day takes place on the last day of February each year.

For more information, go to: www.rarediseaseday.org