Nasha Fitter didn’t have time. There had to be a better, faster way, she thought — not just for her daughter, who recently turned 7, but for other people with rare diseases. Fitter tapped her tech...
The goal of genetic counseling is to help you learn more about how genetic conditions might affect you or your family. Genetic conditions are caused by a change in the normal DNA sequence, which is...
Bernharð is a SLC13A5 Superhero. Here are a few fun facts Bernharð's family shared with us! Name: Bernharð, Age: 4, Homecountry: Iceland, Bernharð has a support dog named Jaki, which means "Iceberg" in English. Jaki...
For the first decade of their daughter's life, Tessa Nye's parents desperately sought to find the cause of her hundreds of daily seizures. But after her brother Colton started having seizures shortly after birth, their...
Lucas is a SLC13A5 Superhero. Here are a few fun facts Lucas' family shared with us! Name: Lucas, Age: 3, Homestate: New York, Itsy Bitsy Spider is Lucas' favorite song...
Roos is a SLC13A5 Superhero. Here are a few fun facts Roos' family shared with us! Name: Roos. Age: 10. Homecountry: Netherlands. Roos loves to swim in the sea...
My little sister Meredith has SLC13A5 Epilepsy. When my mom was pregnant, I would talk to her belly every day, telling her about my day and how I could not wait to meet her. I...
Graphs can communicate important information. Understanding how to interpret these graphs can help rare disease families understand important scientific discoveries and potentially understand clinically relevant information. While there are multiple kinds of graphs, we are...
