As most of you know...I have been working with Mastokids for several years, since Audrey was diagnosed with pediatric mastocytosis when she was 4 months old. We have been very blessed that Audrey's condition has been mild, but we are EXTREMELY grateful for the support we've received over the years from other parents who have faced the same diagnosis with their children.
Last year, the National Organization of Rare Disorders (NORD) launched their first annual Rare Disease Day in the United States, and Mastokids joined them in support! We were helpful in getting Governor proclamation letters of, and letters to editors in hometown newspapers, and quite a few other media endeavors.
This year, we are continuing to support this day, by trying to spread awareness of mastocytosis. There are various ways we are trying to incorporate awareness for all rare diseases over the next few days!
Today's activity....
If you would like more information about Rare Disease Day, visit www.rarediseaseday.org, or you could find out more about pediatric mastocytosis at www.mastokids.org!
Thanks for your support over the years. Look for more posts to come in the next few days about ways we at Mastokids are getting involved and spreading awareness!
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