Rare Disease Day occurs on the last day of February annually, this year, it falls on 29 February 2024 – the rarest day in the calendar!
Today we join forces globally to raise awareness and promote change for over 300 million people living with a rare disease. Here are some basic ways you can get involved: update your social media profile by downloading any of these banners, graphics, backgrounds or filters, or share a rare story using the above hashtags.
RARE is MANY, RARE is STRONG, RARE is PROUD!
Did you know?
? 70% of rare diseases start in childhood.
? Around 5% of the world's population have a rare disease.
? Around 95% of rare diseases have no effective treatment.
? A disease is rare if it affects fewer than 5 in 10,000 people.
? It is prominently cited that there are more than 7,000 different rare diseases.
? An estimated 2 million Australians are living with a rare disease and 300 million people globally are living with a rare disease.
? Approximately 1 in 100, 000 live births worldwide are affected by Batten disease.
Right now, in Australia there are more than 50 children and young people living with the devastating neurodegenerative condition called Batten disease. BDSRA Australia is dedicated to improving the lives and well-being of individuals and their families affected by Batten disease, through providing practical family support, advancing education and awareness of Batten disease, and funding vital medical research towards treatments and cures.
We've chosen the 2022 family retreat group photo, to show our own Rare and wonderful community. We come together through shared experiences, the impacts of Batten disease and the passion and advocacy to see change and a cure for those affected by Batten Disease.
We encourage our community to post, comment, share - whatever you can! - to help raise awareness for rare disease and Batten disease. For more information visit to the Rare Disease Day website or Rare Voices Australia website.
#RareDiseaseDay
#battendisease
#bdsraaustralia
#childhoodraredisease
#LightUpForRare
#ShareYourColour