Our Work
We advocate for, and provide, specialist mental health support for the rare disease community.
Whatever your organisation size, we can tailor a package of support to work for your patient group.
Unique patient communities require unique and specialised mental health support
The psychosocial impact of rare disease
Living with a rare disease is psychologically and emotionally demanding. The Rare Disease UK Report: Living with a Rare Condition: the effect on Mental Health (2018) showed that living with a rare disease is challenging not just physically, but emotionally. The diagnosis of a rare disease emotionally impacts not just individuals, but families , relationships, finances , work-life and future choices. It frequently involves low mood, anxiety, emotional exhaustion, and may also at times lead to suicidal thoughts or intention.
We are also aware that rare diseases are diverse and complex. We will work closely with your particular organisation or service to understand more about, and address appropriately, the impact of your particular rare disease within your own unique community.
Find out more about professional, fully managed Telephone and Video Counselling Services and Additional Services.
The emotional and psychological impact of rare disease can be considerable due to:
- 9Uncertain prognoses and treatment pathways
- 9Lengthy diagnostic odysseys
- 9Low disease awareness amongst healthcare professionals
- 9The burden of being the 'patient expert'
- 9The impact on family life, choices and relationship dynamics
- 9Inter-acting emotional and physical symptoms
- 9The impact on the sense of self and identity
- 9Unpleasant - and ongoing - tests and treatments
- 9Fears about the future
- 9The psychological impact of genetic inheritance
In addition, patients/parents may have been told at some point the condition is ‘all in their head’, and for trust in health care professionals (including counsellors) to be correspondingly low. The high logistical burden of a disease, and mobility or caring concerns, can also inhibit access to professional emotional support. Rareminds is here to help .
'The Counselling Service has been an essential part of our support services for many years. Having the ability to refer our members to the service at any time has been critically important both for the person referred, and for staff and volunteers who might otherwise feel helpless in the face of emotional distress."
Jo Grey | CEO | AMEND
Our Partner Charities
