SETBP1 Society

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President of SETBP1 Society and Parent Advocate for SETBP1-HD SETPB1 Society's mission is to provide support to individuals with SETBP1 haploinsufficiency disorde Our Mission is to provide support to individuals with SETBP1 disorder and their families, to promote discussion and fund research, and to bring awareness and education to the public.

ICO

820891558

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819

X (Twitter)

322

Address

Austin

Address: PO Box 301584, AustinWeb: Sign in to see organisation websiteFacebook: SETBP1X (Twitter): setbp1ICO: 820891558

SETBP1 Society First ever international SETBP1 conference brings together families researchers and supporting organizations First ever international SETBP1 conference brings together families researchers and supporting organizations 22625 Kelsey Bennett In October 2024 nearly 100 BiteSized Breakthroughs February 6 2025 SETBP1 Genetics BiteSized Breakthroughs Breaking down new breakthroughs in SETBP1 research in an easy to digest way Welcome to our Looking back SETBP1 Society SETBP1HD Timeline As we spring into 2025 excited for the research and discoveries to come we look back into the history of SETBP1 Community Survey 2024 SETBP1 Society provided a survey to the SETBP1 Community for parents and caregivers to complete starting in April earlier this Faces of SETBP1 SETBP1 Society supports over 220 families impacted by SETBP1 haploinsufficiency disorder SETBP1HD and related disorders. We have a private Facebook SCoReS New Study Launch Results from Previous Studies New SETBP1 Behaviors and Characteristics Study Prior SCoReS Study Results New SETBP1 Behaviors and Characteristics Study Learn about a Read More Looking back SETBP1 Society SETBP1HD Timeline As we spring into 2025 excited for the research and discoveries to come we look back into the history of SETBP1 Society and SETBP1 haploinsufficiency disorder. From 2011 to today Read More BiteSized Breakthroughs December 18 2024 SETBP1 Genetics BiteSized Breakthroughs Breaking down new breakthroughs in SETBP1 research in an easy to digest way Welcome to our 4th SETBP1 Genetics Bitesized Breakthrough. This time we are looking Be the hope.

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Margaret

What an incredible initiative! The first international SETBP1 conference is such a great opportunity for families and researchers to connect and share knowledge. πŸ’™ #SETBP1Strong

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Joanna

1. How can we further engage and support families affected by SETBP1 haploinsufficiency to ensure their voices are heard in research discussions?

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Sylvia

Excited for the BiteSized Breakthroughs series! It's amazing to see research being shared in accessible ways. Thank you, SETBP1 Society, for your commitment to awareness and education! 🌟 #HopeForSETBP1

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Faith

2. What role do you think social media and community engagement play in raising awareness about SETBP1 disorders and fostering collaboration among researchers and families?

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