SETBP1 Society
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.
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Austin
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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From Social media
News about SETBP1 Society from their social media (Facebook and X).
- SETBP1 Society
- 2024-09-04
π΄ββοΈ SETBP1Strong Grant for the Million Dollar Bike Ride is Now Open for Applications. (tw) ... more
Liked (1) Commented (0)- SETBP1 Society
- 2024-06-26
4/4 Higher rates for neonatal feeding difficulties and febrile seizures were reported for individuals with SETBP1-HD. (tw) ... more
Liked (0) Commented (0)Discussions
OdpovΔdΓ v diskuzi
1
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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Brooklyn Simmons
2 days ago
OdpovΔdΓ v diskuzi
1
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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Brooklyn Simmons
2 days ago
Latest reviews
Together, we can make a real impact in communities around the world. Help us bring hope and support.
What an incredible initiative! The first international SETBP1 conference is such a great opportunity for families and researchers to connect and share knowledge. π #SETBP1Strong
Brooklyn Simmons
Product Manager
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! π #HopeForSETBP1
Brooklyn Simmons
Product Manager
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