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The Schinzel-Giedion Syndrome Foundation welcomes you to their Tuesday Takeover of RARE Revs social media channels. We are delighted to share with you info about our children’s rare condition and welcome questions or comments today : [email protected] #SGS #RareDisease #TuesdayTakeover

Genetics Explained Schinzel-Giedion Syndrome Foundation #SGS #Genetics #TuesdayTakeover

Our children suffer from a range of symptoms depending on the exact mutation of the SETBP1 gene. Symptoms can range from severe to mild with those children diagnosed with the “typical” SGS having an average lifespan of just 18-48 months. Schinzel-Giedion Syndrome Foundation #SGS #Disabled

What is the SGS Foundation? Schinzel-Giedion Syndrome Foundation #SGS #PatientGroup #RareDiseaseCharity

SGS is an ultra rare disease and more research is needed into how the SETBP1 gene mutation affects brain development. The Schinzel-Giedion Syndrome Foundation is seeking to establish a number of important research projects. #SGS #RareDisease #TuesdayTakeover

The Schinzel-Giedion Syndrome Foundation has an International Awareness Day on 13th November. The day aims to encourage families around the world to share photos and stories about their wonderful SGS children and information about their condition. To donate visit sgsfoundation.org/fundraise-for-… #SGS

We want to show you the level of care our SGS children need so we asked 2 parents from our community to send us some videos. Meet Emma, 3 from Denmark and Jude also 3 from the UK. Both have “typical” SGS and require 24/7 care. Schinzel-Giedion Syndrome Foundation #SGS #PatientVoice #RareDisease

On behalf of the whole SGS community, the Schinzel-Giedion Syndrome Foundation thanks you for helping us to raise awareness of Schinzel Giedion Syndrome. We hope that you can join us over on our own social media channels for our Awareness Day on 13th Nov #SGS #TuesdayTakeover #RareDisease

We want to show you the level of daily care our SGS children need so we asked two parents to send us some videos of their daily routine. Meet Emma from Denmark who is 3 and Jude from UK who is also 3. Both children require 24/7 care. fb.watch/9aww6Hlofi/ via facebookwatch

Please consider donating to our fundraiser for our biorepository to accelerate SGS research. Every donation makes a big difference to our children. facebook.com/donate/4320775…

Every Sunday we will share amazing photos and videos of SGS kids playing, practicing and developing their skills, as an inspiration to the families, carers, doctors and researchers who lives are changed by our incredible kids with SGS. Here is Jude, 3, playing with his parrot!

Some of our amazing families have shared their stories with us. They are all available on our website. Here is Avery’s story lnkd.in/ddJ-hye

Do you want the latest news about our research projects, fundraising and our upcoming SGS Family Conference? Go to sgsfoundation.org and sign up for our newsletter!

The Schinzel-Giedion Syndrome Foundation is Appointing New Trustees! Please visit our website’s Latest News page for more information lnkd.in/gT9rDqrD Application deadline 31st March 2022. #sgs #setbp1 #raredisease #rareepilepsy #trustee

RT Schinzel-Giedion Syndrome Foundation: The Schinzel-Giedion Syndrome Foundation is Appointing New Trustees! Please visit our website’s Latest News page for more information lnkd.in/gT9rDqrD Application deadline 31st March 2022. #sgs #setbp1 #raredisease #rareepile…

instagram.com/reel/CagnCVNg6…

Happy #RareDiseaseDay2022! #sgs #schinzelgiedionsyndrome #setbp1