Living with Persistent Uncertainty without a Rare Disease Diagnosis with Meghan Halley

Once Upon A Gene · Jun 24, 2021 · 34m

ONCE UPON A GENE - EPISODE 088

Living with Persistent Uncertainty Without a Rare Disease Diagnosis - Meghan Halley

I met Meghan Halley on the NORD Living Rare Living Stronger planning committee. She co-chairs the patient and family support group for the Undiagnosed Diseases Network. She's a Stanford research scholar and a mom to her undiagnosed son Philip.

EPISODE HIGHLIGHTS

Can you share about yourself?

I'm the mom of three kids and my middle son Philip, who is six years old, is undiagnosed with a rare condition. I've become more involved in advocacy as it relates to access to diagnosis for…