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 […]
π£π£SAVE THE DATE!! ππ The location and dates for the 2024 SETBP1 Family & Research Conference have been set! The in-person international gathering will be October 11th-13th, 2024 in Austin, TX USA! Can’t wait to see our SETBP1 families and researchers gather together again under one roof to connect, share and learn! Learn more: bit.ly/setbp1-conference
Give Now & Make an Impact Join our GT25 campaign to help us reach our $25K goal this year! We aim to raise $25,000 on GivingTuesday (Tuesday, November 28th) for our onsite-research, research collaborations and gathering at our 2024 SETBP1 Family & Research Conference! How do we get to the 25K? By creating 25 Facebook […]
SETBP1Strong Team Rides in Philly!!! For the 5th year in a row, the SETBP1Strong Team participated in the Million Dollar Bike Ride in Philadelphia, PA on June 11th. Each year since 2020 unique challenges have impacted participation within the Million Dollar Bike Ride. For 2020 and 2021, the event was entirely virtual due to covid. […]
Registration is open for the 2023 Million Dollar Bike Ride (MDBR)!! We would love for you to join our SETBP1Strong team! You can ride in-person on Saturday, June 10th in Philadelphia, PA or you can ride virtually. Each year, SETBP1 friends and family ride to raise funds for SETBP1-HD and related disorder research in the […]
SETBP1 FAMILY IN-PERSON MEETUP Let’s get together in Dallas, TX for a SETBP1 family meetup. This is a great opportunity to visit with other SETBP1 parents and for our SETBP1 kiddos to play together. Where: Klyde Warren Park in Dallas, TX β (https://www.klydewarrenpark.org/). It is a 5.2 acre park with food trucks, play equipment, tables […]
