SHCA publishes new report ‘Are you okay? Rare diseases and mental health – A case study report’

Mental health challenges often arise as a direct or indirect consequence of a rare condition. The uncertainty of diagnosis, limited treatment options, fragmented care, and social stigma all combine to impact mental wellbeing. The SHCA and its member organisations have long been concerned that, despite mental health being an integral part of living well with a rare condition, it remains under-supported and under-prioritised across the rare disease pathway.

Through first-hand accounts, the report highlights the emotional and psychological toll of rare conditions not just on individuals, but also on those who care for and support them. These stories provide valuable insights into how mental health challenges unfold over time, what support has made a difference, and where current systems are falling short. 

The stories in this report reinforce the recommendations we made in our 2024 briefing, specifically that mental health support for those affected by rare conditions should be: 

1. 1. Accessible in a timely and equitable way 
2. 2. Integrated into wider care 
3. 3. Available through peer support networks 
4. 4. Offered to families and carers 
5. 5. Provided in collaboration with charities 

You can access the report here