Rareminds

Living with a rare condition can bring challenges that extend far beyond medical care. Families may experience uncertainty about the future, anxiety around health changes, the pressures of caring, disrupted sleep, relationship difficulties and feelings of isolation. Receiving a diagnosis can also mean adjusting to a future that looks different from the one originally imagined. Rareminds recognises that these experiences can affect the wellbeing of the whole family, not just the person diagnosed. Specialist counselling and emotional support Rareminds works with rare condition charities, patient groups and other organisations to provide access to specialist counselling for individuals and couples. Counselling is delivered by qualified therapists who have received additional training in understanding the psychological and emotional challenges associated with rare conditions. This specialist understanding can be particularly valuable for families who feel that their experiences are difficult to explain or are not fully understood by professionals unfamiliar with rare conditions. Support may help people explore difficult feelings, manage anxiety, cope with uncertainty and loss, navigate changes in family relationships, and develop ways of looking after their own emotional wellbeing while supporting someone else. Counselling is available by telephone or video call. Access arrangements depend on the relevant partner organisation, so families should contact their rare condition charity or visit the Rareminds website to find out what support may be available to them.

Free online resources through the Wellbeing Hub

Rareminds also provides a free online Wellbeing Hub, offering information, practical guidance and exercises to help people navigate the emotional challenges associated with rare conditions. It can be useful for parents and carers, as well as people living with a rare condition themselves.