Regaining Hope: My Journey to Rare Disease Advocacy
As someone who has been involved in rare disease advocacy for a long time, I am sharing my journey of...
About Me
PKU, Newborn Screening, & Rare Disease Advocate
I’ve been an advocate for PKU, newborn screening, and rare disease awareness since 2012. My first project was a film called “My PKU Life”, and since then I’ve been traveling around the world speaking about life with this rare disease and producing other media projects about PKU..
