Unique Rare Chromosome Disorder Support Group

With our help, parents and carers can begin to understand and come to terms with their family member’s condition and its likely effects. We break down complex terminology into accessible language, and go through therapies and treatments seen to have been effective in others. We aim to help families become ‘expert’ in the condition, able to better plan care and better advocate for their family member to ensure they receive appropriate support to reach their full potential, whatever that might be. With many hundreds of different RCDs, the challenges and symptoms our families face cover a very wide spectrum, as do the outcomes for those affected. The information we provide goes beyond purely medical and covers other important issues like behaviour, communication and education, drawing on the experiences of other families to help those coming to term with a diagnosis. This is often quite literally the only information available to them and gives families some renewed hope and confidence as they face the future.