We asked Katie White what it was like living with Myhre Syndrome. Katie is the youngest of three children and while doctors suspected a genetic anomaly from when she was a baby, it wasn’t until she was 16 years old that she was finally diagnosed with Myhre.
Read moreMeet Alex and Lee
Myhre Syndrome parents regularly run circles around their kids, sometime literally! Meet Alex and his mom, Lee, whose love for her son inspired her to lace up her running shoes in support of MSF.
Read moreFrom the laboratory to the library; Rare disease research
In the rare disease world patients, parents and healthcare providers have one thing in common, they all wish that research would be faster.
Read moreI Will Be Strong
“What we’re looking at here is a slight anomaly in your baby’s development.”
The words that turned our lives around almost 16 years ago.