Tag: Noonan Syndrome

A survey of more than 60 families living with Noonan Syndrome has highlighted the need for more social support and medical awareness.
Noonan Syndrome, though classed as a ‘rare’ genetic condition, is estimated to affect between 1 in 2000 to 1 in 2500 births in the UK, causing diverse health issues.
The findings of the collaborative study between Loughborough University and the Noonan Association Syndrome are being shared as part of a month-long awareness campaign.
One of the key survey findings is that there is a lack of awareness of the rare genetic condition – even among medical professionals, which can lead to difficulties in accessing care.
Another theme that emerged is that the social and emotional impacts of living with Noonan Syndrome are overlooked for individuals and carers.
The researchers and charity are now calling for greater awareness, research, and support systems.
Individuals and families – including Ian Legg, the Fay family, and Andrea Reid-Kelly – are sharing t