Save the Date: 2026 SETBP1 Family & Research Conference Austin, Texas β’ November 6β8, 2026 DoubleTree Suites by Hilton Austin Downtown Capitol Weβre excited to announce the dates for our next SETBP1 Family & Research Conference, bringing together families, clinicians, and researchers from around the world for a weekend of connection, learning, and collaboration. π […]
Big News: $25,000 Donation Match for the SETBP1Strong Team at the 2025 Million Dollar Bike Ride! Weβre thrilled to announce that SETBP1 Society has secured a $25,000 donation match from a generous donor for our SETBP1Strong Teamβand that means every dollar you give now goes twice as far to accelerate research for SETBP1 haploinsufficiency disorder […]
Join the SETBP1Strong Team in the 2025 Million Dollar Bike Ride! Registration is now OPEN! SETBP1 Society and the University of Pennsylvania Orphan Disease Center (UPenn ODC) invite you to participate in the Million Dollar Bike Ride. This annual giving festival brings together rare disease families, friends and supporters to cycle to raise funds for […]
First ever international SETBP1 conference brings together families, researchers, and supporting organizations 2/26/25, Kelsey Bennett
π πΊππ£πππππ’ππ πππ¦, the global celebration of generosity and giving, is THIS TUESDAY, December 3rd! This inspiring movement highlights the causes that uplift our families, friends, and loved ones. π How will YOU Give Hope and Lend a Hand this πΊππ£πππππ’ππ πππ¦? Here are some ways you can help: 1οΈβ£ Start a Fundraiser – Create a SETBP1 […]
The SETBP1 Family & Research Conference is THIS OCTOBER from Friday early evening on the 11th through Sunday lunch on the 13th in Austin, TX! Our Empowering Independence-themed conference provides you the opportunity to ask your burning questions from SETBP1 medical specialists, researchers and therapists, to hear about the latest SETBP1 research findings, to connect […]
The SETBP1 Family & Research Conference is THIS OCTOBER from Friday early evening on the 11th through Sunday lunch on the 13th in Austin, TX! Our Empowering Independence-themed conference provides you the opportunity to ask your burning questions from SETBP1 medical specialists, researchers and therapists, to hear about the latest SETBP1 research findings, to connect […]
πππ π’π¬ππ«πππ’π¨π§ for our 2024 πΊπ¬π»π©π·1 ππππππ & πΉπππππππ πͺπππππππππ is now ππππ! Our conference will be in the lively and beautiful city of Austin, TX, USA from Friday, October 11th – Sunday, October 13th at the Cambria Hotel Austin Uptown Near the Domain! SETBP1 families will get the chance to connect with each other, learn […]
SETBP1 Genetics: Bite-Sized Breakthroughs Breaking down new breakthroughs in SETBP1 research in an easy to digest way Welcome to our 2nd βSETBP1 Genetics: Bite-sized Breakthroughβ. –This time, we are looking back at a breakthrough article published in the European Journal of Human Genetics in 2021 by Nadieh Jansen, MS, located at Radboud University Medical Center […]
Join the SETBP1Strong Team in the 2024 Million Dollar Bike Ride! Registration is now OPEN! SETBP1 Society in partnership with Schinzel-Gideon Syndrome Foundation and the University of Pennsylvania Orphan Disease Center (UPenn ODC) invite you to participate in the Million Dollar Bike Ride. This annual giving festival brings together rare disease families, friends and supporters […]
