WE CAN IMPROVE THE QUALITY OF LIFE FOR PEOPLE WITH RARE GENETIC SYNDROMES BY SHARING KNOWLEDGE.
Key Topics
WE ARE UNDERPINNED BY THE AIM OF PROVIDING CURRENT RESEARCH FINDINGS TO FAMILIES AND PROFESSIONALS, FOCUSING ON THE DIVERSE DIFFICULTIES EXPERIENCED.
Research News
FAMILIES & CARERS RESPOND TO RECEIVING A DIAGNOSIS IN MANY DIFFERENT WAYS. THEY HAVE TOLD US THAT IT CAN BE HELPFUL TO SHARE EXPERIENCES AND KNOWLEDGE.
Upcoming EventsIf you have arrived at FIND you are likely to be a parent, carer and/or professional who wants to learn more about a rare genetic syndrome that affects your child or someone you know.
In our experience...
When a person receives a diagnosis of a genetic syndrome, families and carers can respond in many different ways. Families need to think through what a diagnosis means in their own time. Some families may prefer to learn everything they can about a syndrome straight away, whereas others may prefer to gather information as they go, because having too much information can feel overwhelming. Many families have described feeling split between these two positions and moving back and forth between them.
FIND is...
driven by the aim of providing current research findings to
families and professionals in an bite-sized format.
How can we help you?
