Rare Disease Day is celebrated worldwide on the last day of February, so this year we’ll celebrate on Thursday, February 28th. For 2013 the theme for Rare Disease Day is “Rare Disorders Without Borders.” Nowhere is this more evident than the online space, where rare disease patients and caregivers provide support for one another.
The purpose of Rare Disease Day is to spread awareness of rare disorders. For example, many people are unaware that one in 10 Americans live with a rare disease. To support Rare Disease Day 2013, the team at Siren Interactive has created an infographic on rare diseases. It provides a visually interesting way to learn about orphan conditions and share this information. Please view the infographic and spread the word by sharing it with your social network.
A personal connection
For the first two years of her life, my daughter Casey, had medical issues but no diagnosis of what was wrong. Despite some of the best doctors in one of the largest cities in America trying to find a diagnosis, it came down to me, her mother, doing Google searches. I became a “Detective Mom.” Desperate for knowledge, I was able to locate the information that eventually led to the diagnosis of a rare disease: nail-patella syndrome. Today, Casey is thriving, enjoying sixth grade and playing the violin.
Unfortunately, our long journey to diagnosis and treatment is way too common. This is why Rare Disease Day is so important. I hope you learn something from our rare disease infographic and help spread awareness by sharing it with your community.
Wendy White, the Founder and President of Siren Interactive, is the mother of a daughter with a rare disorder. She also serves as a board member for the National Organization for Rare Disorders (NORD), an executive committee board member for the Healthcare Businesswomen’s Association (HBA) and a trustee for the Boys & Girls Club of the Union League of Chicago.