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Help shine a light on locals living with rare diseases

Posted: 12pm 22 Feb 2022

Moreton Bay residents are being asked to light up their houses and businesses in pink, blue, green and purple lights this month in honour of Rare Disease Day.

The day is celebrated on the last day of the month (February 28), with the main objective to raise awareness about rare diseases and their impact on the estimated two million people who are affected.

It is backed by the Immune Deficiencies Foundation Australia (IDFA), a not-for-profit organisation which offers education, advocacy and awareness for Australians living with primary immunodeficiencies, which is recognised as a rare disease.

IDFA Chief Executive Officer Carolyn Dews is hoping the community will come on board to support the initiative.

“Rare Disease Day is celebrated annually on the last day of February, the rarest day of the year,” she said.

“We’re encouraging locals in the Moreton Bay Region to light up their home, business or landmark in the Rare Disease Day colours at 7pm.

“By doing so, the global chain of lights helps to illuminate the stories of people living with a rare disease.

“A disease is rare if it affects less than five in 10,000 people. It is prominently cited that there are more than 7,000 different rare diseases. However, people living with a rare disease are so much more than statistics.”

Help people like Pearl

Moreton Bay local and IDFA Board Member Pearl Sims lives with Common Variable Immunodeficiency, which is classified as a rare disease.

“We need to raise awareness for all rare diseases, especially some that are invisible, so there is greater understanding of the challenges we face in our communities and in government where real change can be made to make our lives better," she said. 

In 2021, 500 buildings around the world turned on their lights to take part in Rare Disease Day.

Visit https://www.idfa.org.au/2022-rare-disease-day/ for more information.

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