Rare disease families: how do they really cope?
Knowledge-focused
Not yet recruiting
This study looks at how children with rare diseases and their families adjust emotionally over time. Researchers will ask 240 families to fill out online surveys and some will also report daily feelings via smartphone. The goal is to learn what helps or hurts mental health and qu…
Sponsor: Markus A. Landolt • Aim: Knowledge-focused
Last updated May 04, 2026 16:20 UTC