Worst Thing to Say to Someone Living with a Rare Disease

"It could always be worse." Five words that can: make us feel guilty, show a complete lack of understanding, imply we should just "accept" it, perpetuate a "toxic positivity" mindset, offer no real support, and minimize the experience of rare.

What can you say instead? "You are going through something difficult; what's this been like for you?"

Navigating rare disease care can be exceptionally complex. If you are interested in learning more about the latest research opportunities in your rare disease, you can contact the Know Rare Support Team at support@knowrare.com.