Counselling & Wellbeing for Rare Disease Communities
Bespoke services for your unique patient group
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.
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 .