I’m an Expert, Too! Communicating with HCPs: 2023 RARE Advocacy Summit Session

As part of the Empowering the RARE Individual track from the 2023 RARE Advocacy Summit, this panel, I’m an Expert, Too! Communicating with HCPs, is for patients, caregivers, and advocates who are the experts moreso than the doctors, and offers solutions for communicating with the providers.

While people with rare diseases may be experts on their condition, doctors may not always recognize this fact. Learn how to talk to doctors, advocate as an expert in your disease, and what to do when health care providers fail to speak in understandable ways.

Moderator:
Daniel DeFabio
Director, Community Engagement, Global Genes

Panelists:
• Nicole Glenn, MD
Pediatrician and International Delegate, Yellow Brick Road Project

• Kim Aldinger, PhD
Assistant Professor of Pediatrics, Seattle Children’s Hospital

• Mike Porath
Founder and CEO, The MIghty