Q4 Quarterly SETBP1 Collaboration Call Thursday, December 10th at 11:00 am CST/12:00 pm ET/5:00 pm GMT The purpose of the quarterly SETBP1 calls is to enable researchers, specialists, scientists, and industry from around the world to share their research, their expertise, and collaborate with each other. The goal is to move research forward faster through […]
Give Now & Make an Impact [ultimeter id=’3052′] Join our GT25 campaign to help us reach over $100K this year! We aim to raise $25,000 on Giving Tuesday for targeted SETBP1 disorder research, create 25 Facebook Fundraisers linked to SETBP1 Society, match $25 for every Facebook Fundraiser linked to SETBP1 Society and match an additional […]
SETBP1 Family Presentation Saturday, November 7th at 1:30pm CST/2:30 pm ET/7:30 pm GMT This presentation is open to all SETBP1 families. A Q&A session will follow the presentation. Presentation title: Speech and Language Abilities in Children with SETBP1 Disorder Presenter: Angela Morgan, PhD Speech and Language group at the Murdoch Children’s Research Institute For families […]
Please register for each of the virtual meeting sessions that you would like to attend by clicking the hyperlinks below. All presentations will include time for a live Q&A and will be recorded. General Session 1, August 7: https://bit.ly/3j9iYls SETBP1 Meeting, August 9: https://bit.ly/2Wl9I47 General Session 2, August 14: https://bit.ly/3fCqrr1 SETBP1 Families VIRTUAL CONFERENCE AGENDA […]
Our SETBP1Strong Team rode again in the University of Pennsylvania Orphan Disease Center Million Dollar Bike Ride on Saturday, June 13, 2020! This fundraising event was an unbelievable success! Due to the current pandemic, our 17 SETBP1Strong cyclists joined around 700 other virtual cyclists from around the world and from 39 other rare disease groups […]
This Giving Tuesday, December 3rd, consider giving a little to support SETBP1 Society! This year, we have generous $5,000 donation matching from SETBP1 supporters starting on December 3rd! Facebook is also matching up to $7 million starting at 7:00am CST/8:00am ET until funds run out. Your donation could be doubled or even tripled!! Our goal […]
The University of Pennsylvania Orphan Disease Center accepted grants for a one-year grant for $67,943 for SETBP1 Disorder research through their Million Dollar Bike Ride Pilot Grant program! The one-page LOI was due no later than MONDAY, SEPTEMBER 23, 2019 by 8pm (EST) and the grant proposals were due no later than THURSDAY, OCTOBER 24, […]
SETBP1 Society and the University of Pennsylvania Orphan Disease Center invite you to participate in the Million Dollar Bike Ride on Saturday, June 8, 2019 to raise money for research in rare diseases, including SETBP1 disorder. 100% of registration and fundraising money will go towards SETBP1 research! Not only that, but the Orphan Disease Center […]
