Big News: $25,000 Donation Match for the SETBP1Strong Team at the 2025 Million Dollar Bike Ride! We’re thrilled to announce that SETBP1 Society has secured a $25,000 donation match from a generous donor for our SETBP1Strong Team—and that means every dollar you give now goes twice as far to accelerate research for SETBP1 haploinsufficiency disorder […]
At SETBP1 Society, we are committed to a singular mission: advancing research that leads to effective treatments and improved quality of life for individuals with SETBP1 haploinsufficiency disorder (SETBP1-HD) and related disorders. While SETBP1-HD is considered ultra-rare—with fewer than 300 known individuals worldwide—important scientific progress has been made since the first case was identified in […]
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, the last 13 years have laid the foundations of hope for the next scientific breakthrough in SETBP1-HD. Together, we’ve achieved so much. Take a look! […]
SETBP1 Genetics: Bite-Sized Breakthroughs Breaking down new breakthroughs in SETBP1 research in an easy to digest way Welcome to our 4th “SETBP1 Genetics: Bite-sized Breakthrough”. This time, we are looking at a breakthrough article published in Clinical Genetics in 2024 by Haley O Oyler from SETBP1 Society and an esteemed team of medical and professional […]
💙 𝐺𝑖𝑣𝑖𝑛𝑔𝑇𝑢𝑒𝑠𝑑𝑎𝑦, 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. 💙 How will YOU Give Hope and Lend a Hand this 𝐺𝑖𝑣𝑖𝑛𝑔𝑇𝑢𝑒𝑠𝑑𝑎𝑦? Here are some ways you can help: 1️⃣ Start a Fundraiser – Create a SETBP1 […]
The Jackson Laboratory Creates Two Models for SETBP1 Research Mice share more than 95% of our human DNA, meaning we are affected very similarly by disease. For over 90 years, The Jackson Laboratory has utilized this understanding to refine personalized medicine throughout the world and across a spectrum of diseases, now including SETBP1 disorder. Austin, […]
Non-profit for SETBP1 Disorder Exceeds Fundraising Goal during COVID-19 Families from across the globe who have been diagnosed with a very rare neurodevelopmental disorder, SETBP1 disorder, increase total funds raised by 25% for UPenn’s Million Dollar Bike Ride. Austin, TX— October 5, 2020 — In June, non-profit organizations from around the country expected to take […]
