A Nanna’s Love for Her Grandson

A Nanna’s Love for Her Grandson

By: Sharon Cook My name is Sharon Cook and I am the Nanna to Skyler, 17, who was diagnosed with SMS at birth. Skyler lives in North Idaho and I live most of the year in Baja Mexico, one of Skyler’s favorite places to come for an extended stay. We are in a small town...
A Rare Disease Warrior

A Rare Disease Warrior

By: Kayle Jansson, Mom of Embry Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families. Our journey with...
Our Rare Disease Journey

Our Rare Disease Journey

By: Amy Studer, Mom of Reagan Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families. Like all great...