Living with a rare condition: The effect on mental health (2018)

The study has been carried out to establish a clearer understanding on the relationship between rare disease and the mental health.

All Party Parliamentary Group on Rare, Genetic and Undiagnosed Conditions identified mental health as a core issue facing rare disease patients and carers. They highlighted the impact rare disease can have on mental health and underlined the needs of patients and carers who frequently struggle to access support around. The participants included members of Rare Disease UK, Genetic Alliance UK and SWAN UK.

The study, published ahead of UK Mental Health Awareness Week, reveal that:

  • Living with a rare condition can have a huge impact, including anxiety, stress, low mood, emotional exhaustion and suicidal thoughts.
  • Many of the drivers of poor mental health reflect issues that are specific to managing a condition that is rare, and that patients and carers face challenges at many points during their journey from the onset of symptoms onwards.
  • Patients and carers can experience not being taken seriously by healthcare professionals, and sometimes being misdiagnosed with psychiatric illness, when trying to access support for their physical condition. This can have both physical and mental health implications.  

Key findings of the interviews and survey led to a series of recommendations that were refined through consultation at a workshop with external stakeholders: 

Recommendation 1: Healthcare professionals should be provided with the skills, knowledge and capacity to: 

  • demonstrate awareness of the emotional challenges of living with a rare disease;
  •  handle discussions about mental health sensitively.

Recommendation 2: Patients and carers should be routinely signposted to sources of support by healthcare professionals. 

Recommendation 3: Coordinated rare disease services should include assessment of mental health needs and access to mental health services. This should be extended to carers.


If effectively implemented, these changes could do much to address some of the mental health issues patients and carers currently face; and to ensure that mental health is considered as important as rare disease patients’ and carers’ physical health.



If you would like to talk to somebody about mental health or well-being, in the first instance you should talk to your GP. 

You can also access information or support about mental health from: 

Samaritans, which offers free, confidential, 24-hour emotional support over the phone (116 123) or by email ([email protected]), or face-to-face at your local branch: 

Mind, the mental health charity, offers information about mental health and accessing support on their website ( They also provide information over the phone (0300 123 3393), by email ([email protected]) or by text (86463).

Mind has also launched a ‘Find the Words’ Campaign. This aims to support individuals in talking about mental health with their GP: 

Carers UK also offers a free helpline (0808 808 7777) that offers advice on financial and practical matters related to caring, as well as a listening service. They also provide a free online carers forum:

For more information about myaware’s counselling service please contact [email protected]


Download Rare Disease UK Mental Health Report