Mental Health support must become an integral part of standard rare disease care

Bespoke services for your unique patient group

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.

Telephone & Online Counselling

All our counsellors are experienced and registered therapists, trained both in the psychological and emotional aspects of rare disease, and also in providing video or telephone counselling.

Training & Awareness

We can provide information and speakers for patient groups, healthcare professionals and pharmaceutical companies on the psychological aspects of rare disease.

Wellbeing Resources

We can produce and provide a range of resources that address and support your patient community, such as leaflets and videos.

Consultancy

We are always pleased to collaborate on projects with a psychotherapeutic perspective and can help you bring your ideas to fruition.

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."

    Our Partner Charities

    Supporting you to support your rare disease community

    01727 752147

    Registered Address Hertford, Hertfordshire, UK