The origins of Rareminds

In the mid 1990’s, shortly after the birth of their first child, and just as Rareminds founder Kym was completing her training as a psychotherapist, her late husband was diagnosed with a rare cancer. This was long before the internet was available to facilitate the connectivity it does today and information was hard to find.

Fast forward to 2013 and Kym’s two teenage children were unexpectedly diagnosed with a rare underlying genetic condition – the same condition that had led to their father’s cancer. This diagnosis would now require their own life-time surveillance, treatment and would have consequential implications for their own future life-choices.

From her original experiences as a partner and then as a parent, Kym was acutely aware that there is a high emotional burden for everyone impacted by rare conditions. This is compounded by insensitive diagnostic delivery, lack of awareness about mental health needs, and generic approaches by healthcare professionals that do not take into account the complexity of living with a rare disease,

As a teacher/practitioner of online counselling and therapy for many years pre-pandemic, Kym understood how this could be a valuable means of widening access and support to those who may not easily access face-to-face. In 2013, she was approached by the Association of Multiple Endocrine Neoplasia Disorders (AMEND) to provide and extend their online counselling service and mental health support.

In 2017, Kym and a colleague also began providing counselling for a second charity, Neuroendocrine Cancer UK. Over the next few years Kym was approached to provide services for a number of other charities, as well as running a private practice that was working primarily with those impacted by a variety of rare conditions.

Evidence at this time was building across the rare disease community of the difficulty for patients and families in accessing timely and appropriate mental health/counselling support and services that had an understanding of their needs and experiences.

By 2020, it was clear that there was an obvious and urgent need for a rare condition specific mental health organisation dedicated to raising awareness, training professionals and providing specialist counselling and support across communities, patients, parents and family members. And so, from small beginnings, Rareminds began.

Our impact

This counselling experience has been completely different to anything that I have experienced before and I feel more confident and mentally renewed by it.”
– Rareminds counselling client

Feedback

Since 2020 we have provided almost 6,000 counselling sessions.

• 98% of our clients felt better equipped to manage their condition following counselling (2024 client feedback).
• 98% of our clients would recommend their counsellors to others (2024 client feedback).

In 2024 over 1,380 people were supported through our talks, workshops and group programmes.

• 94% of workshop and group programme attendees would recommend us to others.
• 81% of attendees feel more resilient.
• 86% feel less isolated following our workshops and group programmes.

Clinical outcomes

We use the standard clinical evaluation measure CORE 10 to measure the impact of our counselling.

BEFORE COUNSELLING – 65% of Rareminds clients start counselling with an average distress rate of moderate – severe

AFTER COUNSELLING – 71% of our clients have an emotional distress rating of mild – healthy

Read more about our impact