Noonan Syndrome: "The most common rare disease you've never heard of"

Loughborough University researchers have been surveying families from across the UK as part of a project that aims to better understand the social and emotional impact of living with Noonan Syndrome.
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[@kimmcenery2597]

Thank you for sharing xx

[@fayfilmsuk3976]

was a please to be apart of this 😁😁

[@rpennisten1]

Thank you for making this video. My son, Mayer, has Noonan syndrome. While most of the information is my family’s day-to-day, bringing awareness to this community is incredibly important. It’s a rare diagnosis. These kiddos are amazing and resilient, but they go through a lot.

[@lignaquy]

What a wonderful people,all of them! God bless them

[@RareDiaries7]

I have this medical condition. It's a rare disease along with Turner syndrome its predecessor. Turner syndrome imo is what most people have probably heard of because it's an old condition associated with short stature in girls. Noonan syndrome is often referred to a male Turner syndrome. Noonan and Turner are like brothers because they share many of the same characteristics. I celebrated rare disease day which was last month in the US.