05/22/2026
Yesterday, I had the honor of speaking during a virtual conference with and Stanford Center for Continuing Medical Education about the pros and perils of virtual engagement for families navigating medical complexity and rare disease.
One of the things I felt most important to say was this:
Families aren’t always turning to virtual spaces because they distrust providers.
Often, they’re searching for connection, language for what they’re experiencing, and people who understand the reality of living it.
For many of us in the rare disease community, social media became more than a platform. It became a lifeline. A place where isolation softened. A place where we found shared experiences, support, advocacy, and sometimes even answers.
At the same time, these spaces can also carry emotional weight, vulnerability, and complexity.
Both things can be true.
I’m grateful to have been included in such an important conversation centered around lived experiences, caregiving, and the evolving role virtual spaces play in healthcare communities.
🤍
