SETBP1 Data Collection Program – NEW STUDY See how sharing patient information will collectively make a difference in finding targeted treatments for SETBP1-related disorders and other rare disease The SETBP1 community is partnering with RARE-X, a 501(c)(3) nonprofit, to build a Data Collection Program for our families. When you participate in the SETBP1 Data Collection […]
SETBP1 Family Connect – Behavioral Challenges Sunday, March 27th 8PM CST / 9PM EDT Which of your child’s behaviors or challenges are causing the most difficulty for your family currently and how are you managing them? Pediatrician and SETBP1 mom, Erin Otness, will lead a discussion where we can learn from and support each other. […]
Webinar for SETBP1 Data Collection Program with RARE-X tomorrow Join us tomorrow for our RARE-X SETBP1 Data Collection Program launch! Register for the Webinar Saturday 5 March at 1pm ET / 10am PT Jointly hosted by SETBP1 Society and RARE-X We look forward to sharing this exciting new step in our efforts to elevate the […]
Two new SETBP1 research projects funded through 2021 Million Dollar Bike Ride grants SETBP1 Society’s participation in the 2021 Million Dollar Bike Ride generates $91,466 in funding for SETBP1 research. Austin, TX — March 1, 2022 – In June of 2021, Team SETBP1Strong participated in the Million Dollar Bike Ride (MDBR) hosted by the Penn […]
