LAURINBURG — On Feb. 29, the rarest day of the year, patients from around the world will mark the ninth annual Rare Disease Day.
For Chaka Davis Smith of Laurinburg, it is a time when people living with or affected by a rare disease, can come together in solidarity to raise awareness of rare diseases.
Smith’s child, Tristan, was the only person in North Carolina in 2010 diagnosed with Jeune’s Syndrome, a rare malformation of the chest wall that causes chronic respiratory distress. Tristan died two years later, prompting Smith to found the ABCs of Rare Diseases Foundation. He would have been 8 years old on Saturday.
Smith said that while the public is familiar with some rare diseases such as “Lou Gehrig’s Disease” and sympathetic to those affected, many patients and families affected by less widely known rare diseases bear a large share of the burden of funding research and raising public awareness to support the search for treatments. Smith’s foundation helps raise money for families to stay at the Roanld McDonald House.
“We want to share with people that is not easy for those living with rare diseases and their families,” Smith said. “And we also want to recognize those dealing with these rare diseases and celebrate them. We want them to knwo that they are special.”
There will be a candlelight vigil honoring those with rare diseases on Monday at the A.B. Gison Center at 6 p.m.
The city has issued a proclamation declaring Feb. 29 as “Rare Disease Day” in Laurinburg.
There are nearly 7,000 diseases and conditions considered rare (each affecting fewer than 200,000 Americans) in the United States, according to the National Institutes of Health. While each of these diseases may affect small numbers of people, rare diseases as a group affect almost 30 million Americans, health officials say.
This year, the 2016 theme of Rare Disease Day is recognition of the crucial role that patients play in voicing their needs and in instigating change that improves their lives and the lives of their families.
Sean Hepburn Ferrer, the eldest son of the late actress Audrey Hepburn who passed away from rare cancer pseudomyxoma adenocarcinoma, is Rare Disease Day Ambassador.
“Rare Disease Day brings together the millions of people affected by a rare disease across the world,” Ferrer said in a statement. “The number of people living with a rare disease is staggering. This number cannot be ignored.”
Reach Scott Witten at 910-506-3023