There are awareness months for breast cancer and prostate cancer, but up until 6 years ago the 250 million people worldwide diagnosed with a rare disease suffered in silence. Thankfully, those days are over and because of Rare Disease Day their voices are now being heard.
Held every year on February 28th, Rare Disease Day helps raise awareness to the more than 7,000 rare and genetic diseases.
My son, Connor, has Barth Syndrome. He is just one of 88 affected boys nationwide. Following his diagnosis my husband and I said we’d never play the lottery again. We beat the odds only the jackpot was something we never wanted.
The challenges of fighting a rare genetic disease are immense. First there is the difficulty of educating caregivers and physicians about the disease so that my child can be properly cared for. And forget federal funding for treatments and cures. Instead it’s up to the Barth Syndrome Foundation to help. The small charity faces large obstacles at raising money for research to ensure a future for our boys.
So here’s how you can help. Get involved in Global Genes Project’s Wear That You Care. It’s very simple – put on your favorite pair of jeans to recognize Rare Disease Day on Feb. 28.
For more information on Rare Disease Day just follow this link.