Those who face rare diseases are nothing short of inspiring. These are people who don't take "firsts" for granted...

Before this all started, I didn't know physical therapy for a baby was a thing. Now, "How can I turn this into an exercise" consumes me.

“So, I didn’t understand the results of her genetic tests – what did the neurologist say?” Everything stopped. I glanced at the doctor...

Exciting things are happening in Angelman Syndrome research! OV101 | CRISPR/Cas9 | Gene Therapy | #cureangelmannow

One year ago, worries of missed milestones launched months of specialists and tests. Recently, we received a diagnosis we never saw coming.