Report highlights impact of rare diseases on mental health

The Specialised Healthcare Alliance (SHCA) has published a report exploring the impact of rare diseases on mental health. SHCA says 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. However, 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.

 'Are you okay? highlights the emotional and psychological toll of rare conditions not just on individuals, but also on those who care for and support them. It reinforces recommendations made in a 2024 briefing. These include that mental health support for those affected by rare conditions should be:  

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

The SHCA is a coalition of patient groups, charities and corporate supporters. Its membership includes several PIF members.

Read the full report here.