Our leaflet created with Rareminds offers practical information for parents and carers who have a child with an undiagnosed genetic condition.
Having a child with an undiagnosed genetic condition can impact families in many areas of their lives and in a range of ways. Without a diagnosis it can be hard to know what the future holds and it can put a big strain on families and their mental health. We often hear from parents of children with an undiagnosed genetic condition that they feel worried, frustrated, unheard and isolated.
In a SWAN UK survey carried out in 2022, when asked if having a child with an undiagnosed or rare genetic condition was affecting or had previously affected their mental health or wellbeing, more than 75% of respondents said that they had been unwell or very unwell as a result.
This leaflet shares information and guidance on looking after your own wellbeing, couple and family relationships, managing logistics and financial pressure, managing the uncertainty that comes with having a child who has an undiagnosed genetic condition and finding support. We hope that this leaflet will be a useful resource for parents and carers and help them to feel less alone.
Rareminds is the first specialist, non profit, rare disease counselling and psychotherapy service in the UK (and possibly globally). The Rareminds team has been providing online counselling and wellbeing services for rare disease charities since 2014.
Their Wellbeing Hub provides resources and information to help people live as well as possible with rare conditions. Click here to find out more.