Rare Disease Day, a free community resource event, will be held from 10 am-2 pm Saturday, February 29, at Children’s Museum Tucson, 200 S. Sixth Ave.
While rare diseases individually affect small numbers of people, more than 300 million people suffer from one of more than 6,000 diseases, according the Rare Disease Day website. About 70 percent of those are diagnosed as children.
Rare Disease Day began in Europe in 2008 is celebrated internationally on the last day of February to raise awareness and offer support and resources. This is the first year for an event in Tucson.
Rare Disease Day Tucson is a project of Aron Schmidt and Amelia Decker, whose son, Everett, was diagnosed in 2018 with MECP2 Duplication Syndrome, a condition so rare that Amelia, a pediatrician, had never heard of it. As parents of a child with a rare disease, Aron and Amelia, understand the importance of the support and advocacy the day offers.
"Rare Disease Day Tucson will build community and support for the 1 in 20 local community members affected by a rare disease in Tucson," said Aron. "For those of us affected by a rare disease, we are stronger together. We hope Rare Disease Day Tucson provides a chance for our community to rally around those affected by a rare disease."
Rare Disease Day Tucson is a collaboration of rare disease groups, medical providers, community service providers, families, and the general Tucson community designed to create awareness, support, and community throughout Southern Arizona. It is open to anyone within the community. Bring your family to the Children’s Museum Tucson to learn about rare diseases within your community, and support groups within your community helping those affected by rare diseases.
The Children’s Museum Tucson will have free admission all day, from 10 am-5 pm, thanks to support from the Cord Blood Registry.