Register for the SETBP1 Family Conference by July 12th to receive your free gift box! This year’s conference is full of helpful information, scientific updates, and practical tools to take home with you! Check out the Agenda for the SETBP1 Family Meeting and the Agenda for the 2 additional General Session days. SETBP1 Family Meeting: […]
Our SETBP1Strong Team virtually rode in the 2021 Million Dollar Bike Ride again for the 3rd year!! This rare disease fundraising event is sponsored by the University of Pennsylvania Orphan Disease Center. Every $1 raised by each team, even rider registration fees, directly funds research in the disease area represented by the team. Over 40 […]
Tomorrow, over 15 SETBP1 researchers and medical specialists will convene virtually to share their latest research updates! These meetings are imperative in order to advance science in a faster and collaborative manner. Haley Oyler, the SETBP1 Society president, will share the patient advocate perspective to ensure the patient’s perspective is at the forefront of the […]
SETBP1 Society and the University of Pennsylvania Orphan Disease Center invite you to participate in the Million Dollar Bike Ride on Saturday, June 12, 2021 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 […]
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 […]
