The Strachota Senior Center will observe Rare Disease Awareness Day on Thursday.
Two of the seniors at the Strachota Senior Center have grandchildren with rare diseases and in their honor, seniors will be wearing zebra print awareness ribbons on that day to bring attention to the cause. These seniors have seen first-hand the impact that a rare disease can have on a family — mentally, physically and financially. One of the grandchildren has to go to Johns Hopkins in Baltimore for treatment and the other goes to the Mayo Clinic. The two diseases that affect these children are Mohr-Trane Bjaerg Syndrome and Nail-Patella Syndrome.
A rare disease in America is defined as a disease that affects fewer than 200,000 people at any given time. Children are affected 50 percent by rare diseases. The lack of scientific knowledge and quality information on the disease often results in a delay in diagnosis. These diseases are often called orphan diseases because there is no funding for research on a large scale or telethons to help offset expenses.
The center is asking the community to join in and bring awareness to this cause.