On the last day of February, participants around the world will be raising awareness in a grassroots campaign to advocate for those who are affected by rare diseases. The goal of World Rare Disease Day is to bring attention to the need for more research, better information, ground-breaking treatments, higher standards for diagnosis and care, and to help break the isolation that people living with rare disease often times experience (those diagnosed and their families who care for them).
In the United States, awareness for this important cause is going to be raised through special events including educational symposiums as well as local rallies, benefits, and fundraisers. In Texas there are a few big events that you may be interested in attending: an Angioma Awareness 5K fun run, an awareness event hosted by First Response Medical Training and a kids appreciation day hosted by Children Against Hyperinsulinism. This page has more information about these local awareness events as well as others around the country.
A couple of Rare Disease Day awareness events are close to my heart although they’re not happening in Texas. These projects have been coordinated by Carrie, a mom I met online several years ago. Her baby girl, Hannah, was diagnosed with Gaucher’s Disease Type 2 and Type 3 as an infant. Gaucher’s has impacted Hannah’s physical and neurological development as well as her life expectancy. Every day, her mom and dad face challenges caring for their now 2 1/2 year-old daughter (Go Hannah!). To bring awareness to World Rare Disease Day at Hannah’s brother and sister’s school, Carrie has helped organize Jeans for Genes Day (corresponding to a campaign by the Global Genes Project) as well as having 3rd – 5th graders create bracelets for the Children’s Rare Disease Network. Even K – 2nd graders are getting in on the fun by coloring printables and sharing messages of hope. How dedicated is this Nevada Mama?! If you want to get to know Hannah a little better, visit her blog; this little girl will touch your heart!
If you’re inspired to bring awareness to World Rare Disease Day, check out rarediseaseday.us to see how you can help. Remember, you can keep it as simple as liking the Facebook page, writing a blog post :-), or wearing jeans on February 28th!