The Full Story
Raising A Rare was born because I, Elizabeth, needed an outlet to share our journey with Lamb-Shaffer Syndrome. I wanted to share our difficulties with getting diagnosed, our daily struggles and our daily triumphs. My hope was that it could possible help someone else in the same situation.
I have been lucky enough to have the support of my family and close friends and, with their help and encouragement, Raising A Rare has recently become a registered non-profit!
Our mission is to support medical research for Lamb-Shaffer Syndrome and provide financial and informational support to the affected families. Additionally, to support research for other rare genetic syndromes and the affected families.
Despite being a small foundation now, we have big dreams! While our primary focus is medical research, we feel the calling to do so much more! One goal is to have grants available to families who need help with therapies and medical devises. Additionally, we will focus on proper diagnosing of genetic disorders in order to improve on insurance coverages.