#WSSAwarenessDay - Twitter Hashtag

about 1 year ago

Today is International Wiedemann–Steiner Syndrome (WSS) Awareness Day. #WSSAwarenessDay Did you know? Around 1,500 people worldwide have been diagnosed with this rare genetic condition. #WiedemannSteinerSyndrome is caused by changes in the KMT2A gene, which helps control how many other genes in the body work. Because of this, WSS can affect nearly every area of life — from growth and learning, to gastrointestinal challenges, to skeletal anomalies like fused vertebrae, to congenital heart defects. It’s also believed that many more people may be living with WSS but remain undiagnosed or misdiagnosed, because its features vary widely and awareness and access to genetic testing are still limited. The WSS Foundation connects families, providing belonging and support. And while Rare Genes Movement was born from a WSS diagnosis, it has grown into an organization raising awareness and filling the gaps for all families living rare. On days like today, we honor the condition that inspired this movement — and the children who remind us that what makes them rare also makes them extraordinary.

RareRevolutionM's tweet photo. Today is International Wiedemann–Steiner Syndrome (WSS) Awareness Day. #WSSAwarenessDay

Did you know? Around 1,500 people worldwide have been diagnosed with this rare genetic condition. #WiedemannSteinerSyndrome is caused by changes in the KMT2A gene, which helps control how many other genes in the body work. Because of this, WSS can affect nearly every area of life — from growth and learning, to gastrointestinal challenges, to skeletal anomalies like fused vertebrae, to congenital heart defects.

It’s also believed that many more people may be living with WSS but remain undiagnosed or misdiagnosed, because its features vary widely and awareness and access to genetic testing are still limited.

The WSS Foundation connects families, providing belonging and support. And while Rare Genes Movement was born from a WSS diagnosis, it has grown into an organization raising awareness and filling the gaps for all families living rare.

On days like today, we honor the condition that inspired this movement — and the children who remind us that what makes them rare also makes them extraordinary.

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The Wiedemann-Steiner Syndrome (WSS) Foundation @WSSFoundation

over 4 years ago

Meet Bo from USA! As one of the youngest #WSSwarriors diagnosed at 6 months old, Bo is benefiting from strong family & early intervention support. Read more: https://t.co/QnWJDR2zEU. Countdown: 3 months until #WSSAwarenessDay ! #wiedemannsteinersyndrome #WSS #WSSawareness

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The Wiedemann-Steiner Syndrome (WSS) Foundation @WSSFoundation

over 4 years ago

Meet Hannah from the UK! She discovered her #WSS diagnosis at 11 years old, after years of searching. Her mother, Jacqueline, shares their diagnostic journey: https://t.co/Uud3mjetO0 Countdown: 4 months until #WSSAwarenessDay (Sept 15)! #wiedemannsteinersyndrome #WSSawareness

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Mitch Cohen @MitchCohen12

about 5 years ago

but Talulah, our dear little love is teaching us every day, Not just about WSS, but about the amazing things that she can overcome.8/8. #wssawarenessday #wss #weidermannsteiner #weidersteinersyndrome

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Mitch Cohen @MitchCohen12

about 5 years ago

This my granddaughter Talulah. She has WSS. Never heard of it? Well, on #WSSawarenessday let us tell you something about her, about WSS and why “everything little thing gonna be alright” Film and Essay written by Talulah’s mum is, I hope, a beacon for all with rare conditions 1/8

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