Since having Kaleb it's been my mission to educate people on Trisomy and other medical issues and delays that Kaleb has. So many people have never even heard of "Trisomy" and neither had I until Kaleb's diagnosis. I'm constantly learning and wanting to educate myself about other disorders and even more about Kaleb's conditions. So I just found out that there is a "Rare Disease Day" every year, what?! I've never heard about this.
I've added a countdown ticker to my blog for RDD.
This is information from the RDD website, which you can view here.
"Rare Disease Day is an international advocacy day to bring widespread recognition of rare diseases as a global health challenge. The day is celebrated on the last day of February every year and this year will be observed February 29, 2012. Learn more about the History of Rare Disease Day, Past Successes or the Goals and Plans for this year.
Anyone can be involved in Rare Disease Day and there are many suggested activities. The day has been established as a grassroots advocacy day and we encourage everyone to participate in some way.
This website focuses on Rare Disease Day activities in the U.S. To learn what’s happening around the world, go to the global Rare Disease Day website at rarediseaseday.org.
What is a Rare Disease?
In the U.S., a rare disease is one that affects fewer than 200,000 people. This definition comes from the Orphan Drug Act of 1983 and is slightly different from the definition used in Europe. There are nearly 7,000 rare diseases affecting nearly 30 million Americans. In other words, as many as one in ten Americans are suffering from a rare disease.I'm bummed I didn't know about this sooner because I could have done more to raise awareness. Kaleb falls in to the "rare disease" category due to his chromosome disorder, Trisomy 9. BUT, now that I know I need to let you know. That's my main focus right?...getting the word out there.
Besides dealing with their specific medical problems, people with rare diseases struggle to get a proper diagnosis, find information, and get treatment. The rarity of their conditions makes medical research more difficult. For 2012, our focus is solidarity."
I've looked at the events occuring in Florida and found the following incase you'd like to attend (if you don't live in Florida you can find a list on the website above).
University of Florida College of Medicine at Shands Hospital 2nd Annual Rare Disease Day EventDate: February 29, 2012
Location: Grand Atrium of UF/Shands Hospital
The Lymphangiomatosis & Gorham’s Disease Alliance (LGDA), the Orthopaedic & Sports Medicine Institute at the University of Florida College of Medicine & Shands Hospital, and the Byrne Lab for Orphan Disease Research (studying Pompe disease, Barth syndrome, Duchenne and Becker muscular dystrophies, and other diseases) are coming together in Gainesville, FL, for an all-day exhibit and information booth on rare diseases, including bone tumors. Dr. John Reith, Professor and Director of Bone Pathology Lab, Katie Boudreau a member of the Byrne Lab, and Jack Kelly, President, LGDA will be hosting the exhibit, assisted by a number of others from UF Shands. The LGDA, a NORD partner, is a 501 (c)(3) foundation dedicated to patient support and supporting research for this rare disease family. Dr. Reith is a founding member of the LGDA Medical Advisory Council.
Evangel Temple Sunday Morning ServiceEvent Date: February 26, 2012I'm actually looking into the event at UF Shands, obviously that's the closest to us. It's a bit short notice but I'm going to try! :)
Event Contact: Melissa Brown – email@example.comLocation: 5755 Ramona Boulevard, Jacksonville, FL 32210
Families with special needs children are encouraged to attend Sunday morning service as they inform and raise awareness to their congregation about rare diseases and our Special Needs ministry.
I hope everyone had a wonderful weekend, and happy Monday tomorrow!