Committed to serving the rare disease community

About Us

 

We have been providing online counselling and wellbeing services for rare disease charities since 2014.

 

We have been providing counselling and wellbeing services for the rare disease charity AMEND (Association of Multiple Endocrine Neoplasia Disorders) since 2014.  We now also provide services for their subsidiary organistions ACCSupport (Adreno-Cortical Cancer Support) and PPSUK (PhaeoParaSupport UK). 

Since 2017 we have also been providing servies for the rare cancer NET Patient Foundation (now Neuro-endocrine Cancer UK).

Our rare disease counselling grew from the recognition that there was little expertise or acknowledgement of the psychological impact of rare diseases, and the lived experience of our founder, Kym Winter, as a senior practitioner encountering the rare disease community and experience.

 

The Emotional Impact of Rare Disease

Living with a rare disease is psychologically and emotionally demanding. the Rare Disease Report (2018) showed that living with a rare disease frequently involves low mood, anxiety, emotional exhaustion, and may also at times lead to suicidal thoughts or intention.

At RareMinds we believe that specialised mental health services and resources are an essential aspect of good rare disease patient care. 

As well as aspects common to living with common physical illnesses or chronic health conditions, rare disease patients and families bear additional burden.

The rare disease patient experience is unique:

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There is a greater logistical burden of the disease due to the geographical distance of specialist centres.

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The common experience of a complex and lengthy journey to diagnosis.

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The emotional and administrative burden of being the patient expert.

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Lonliness, isolation and feeling different.

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Establishing trust in health care professionals and ‘feeling safe’.

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Clear, established treatments or pathways being less common.

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Exitential preoccupatinos in the face of degenerative aspects.

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Interacting and wide-ranging symptoms.

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The psychological impact of genetic inheritance (as a feature of many rare diseases)

We are also aware that rare diseases are diverse and complex.  As such work 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.

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