SETBP1 Society plans to work with our SETBP1 medical specialists to establish the first ever SETBP1 Multidisciplinary Clinic. The clinic will provide SETBP1 families coordinated care services to develop cohesive treatment plans. This GivingTuesday, we need to raise $25,000 to help establish this clinic. Check out our progress so far!
WHEN: Wednesday, October 26th 7PM CDT / 8PM EDT DETAILS: Party with your SETBP1 community while supporting SETBP1 research at SETBP1 Society’s RARE-X Launch Party! Grab a seat, a beverage and a snack and we’ll all register together and a RARE-X representative will be present to answer questions. Joining the SETBP1 Data Collection Program hosted […]
Recorded presentations from our brilliant 2022 Simons Searchlight Family & Research Conference for SETBP1 families are NOW AVAILABLE!! Check out the Presentation List below and select the associated links to watch the recorded presentations! SETBP1 Talks Welcome from Haley, SETBP1 Society President – Watch Simons Searchlight Registry Update and Q&A | Speaker: Wendy Chung – […]
It has been just over a week since our Simons Searchlight Family & Research Conference for SETBP1 families came to an end. This was our first ever in-person conference for SETBP1 families, our first ever in-person conference for SETBP1 researchers and our first ever in-person gathering of SETBP1 families and researchers together!! It is hard […]
Registration for the in-person Simons Searchlight Family & Research conference for SETBP1 families closes Today (July 14th). The hotel discount also ends Today, July 14th so book your hotel room if you haven’t already! Our 1st in-person conference will be held in Baltimore, MD at the Hyatt Regency Baltimore Inner Harbor from Thursday, August 4th-Sunday, […]
Our SETBP1Strong Team participation in the Million Dollar Bike Ride wrapped up this past Saturday, June 11th in Philadelphia, PA. The event kicked off the night before with registration Friday afternoon at the University of Pennsylvania Orphan Disease Center. Cyclists who registered early enough with fundraising goals picked up their goodie bags packed with their […]
Join our Million Dollar Bike Ride SETBP1Strong Team! Do you love cycling, live near the Philadelphia, Pennsylvania area, or simply want to support SETBP1-HD research? Our SETBP1Strong Team will ride again for the 4th year in a row in the Million Dollar Bike Ride sponsored by the UPenn Orphan Disease Center (ODC) on June 11th. […]
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 […]
SETBP1 Data Collection Program 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 Program, you’ll help […]
