I was honored share our story at the 2021 Seattle Rare Disease Fair which included scientists, clinicians, patients, and patient advocates. This was a great opportunity to share our diagnostic journey, what we know and still need know and where we are headed which is a treatment or cure!
You can view a recording below. This YouTube video includes the entire program; my talk starts at 1:12 and ends at 1:22.
Please share this with anyone who might be helpful in our treatment quest or knows of other patients!