Finding Answers: The Importance of Communicating with Clinicians

The average time for a rare disease patient to be accurately diagnosed is eight years and often requires seeing a variety of specialists. Given the likelihood of a misdiagnosis during this process, it is critical for patients and their caregivers to trust their instincts and advocate for themselves. Hear from experts and advocates about the value of a molecular diagnosis and how to discuss your care with your medical team.

Speakers: Caroline Cheung-Yiu, Tiffany Cook, MS, CCC-SLP & Mary Zupanc, MD