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

[@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.

[@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.

[@EllaBella-76]

@RareDiaries7 •My best friend her sister has Turners here in the UK she has gone on got married is a teacher certainly not easy to deal with but has not let it stop here living life to the best of her abilities..❤️‍🩹💓❤️‍🩹

[@GlanceIntoTheUK]

I'm an adult male 29 with Noonan and recently had a valve replacement and experienced the low body weight and still have it. I also have the pain in my tale bone I think from it. I have good intelligence and can program two way radios and scanners.

[@fayfilmsuk3976]

was a please to be apart of this 😁😁

[@kimmcenery2597]

Thank you for sharing xx

[@lignaquy]

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

[@TracyWolzfelt-pn8wg]

I have from birth I'm short deaf