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Why we are needed

There are approximately 6,000 rare genetic conditions. Each affects less than 0.1% of the population, but together they are one of the greatest causes of disability and early death affecting 3 million in the UK (source: National Human Genome Research Institute).

The complex challenges associated with rare genetic conditions create deep-rooted inequalities that can profoundly impact the emotional wellbeing of every member of the family.

Supporting Siblings with SIBS – Morning Workshop

When one child in a family is living with a rare genetic condition, it can shape family life in all sorts of ways – including for their brothers and sisters.
This supportive and practical small group workshop, facilitated by the charity Sibs, offers an opportunity to pause and think specifically about siblings and their emotional wellbeing. We’ll explore some of the experiences siblings may have, alongside practical ideas for helping them feel included, informed, heard and supported. The focus isn’t on getting everything “right”, but on adding some useful ideas and approaches to your family wellbeing toolkit.

Supporting Siblings with SIBS – Evening Workshop

When one child in a family is living with a rare genetic condition, it can shape family life in all sorts of ways – including for their brothers and sisters.
This supportive and practical small group workshop, facilitated by the charity Sibs, offers an opportunity to pause and think specifically about siblings and their emotional wellbeing.
We’ll explore some of the experiences siblings may have, alongside practical ideas for helping them feel included, informed, heard and supported. The focus isn’t on getting everything “right”, but on adding some useful ideas and approaches to your family wellbeing toolkit.

Journalling for Resilience & Wellbeing

In this practical and evidence-informed session, Dr Ritz, a Consultant Counselling Psychologist , will introduce the reflective practice of journalling and explore how it can enhance emotional wellbeing, build resilience and help us make sense of difficult experiences.