Counselling & Wellbeing for Rare Disease Communities

Bespoke services for your unique patient group

Our Services

We provide professional counselling and wellbeing resources, training & information for rare disease patient groups and organisations.

Whatever your organisation size, we can tailor a package of services 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.


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 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."

    Supporting you to support your rare disease community

    01727 752147

    Registered Address Hertford, Hertfordshire, UK