The EURORDIS Rare Barometer mental health survey—conducted between September and December 2025 with nearly 9,900 participants across 45 European countries—revealed a severe mental health crisis affecting the rare disease community.
The UK participant data reveals a similarly sobering picture with 7 out of 10 people living with rare conditions and their families reporting poor mental health.
465 participants from the UK took part, with 225 rare conditions represented. Their responses show:
- 47% report moderate to severe depression symptoms
- 41% report clinically significant anxiety symptoms
- 38% reported suicidal thoughts in the past 6 months
70% of participants reported having needed professional psychological support in the part six months but only 39% received it.
You can read the full fact sheet here.