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?
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 BENEFITS OF PARTICIPATING IN OUR DATA COLLECTION PROGRAMWe are building the SETBP1 Data Collection Program to … Inform researchers how SETBP1-related disorders change over time Enable better data to use […]
Give Now & Make an Impact [ultimeter id=’3995′] Join our GT25 campaign to help us reach over $125K this year! We aim to raise $25,000 on Giving Tuesday (Tuesday, November 30th) for targeted SETBP1 haploinsufficiency disorder (SETBP1-HD) research, create 25 Facebook Fundraisers linked to SETBP1 Society, match $25 for every Facebook Fundraiser linked to SETBP1 […]
This year’s virtual 3-day SETBP1 Family Conference hosted in partnership with Simons Searchlight wrapped up with an afternoon full of informative and helpful SETBP1 presentations. Last Sunday (August 8th), we learned about the symptoms of sensory processing disorder, updated findings from Dr Carl Ernst’s lab regarding his SETBP1 haploinsufficiency disorder induced pluripotent stem cell research, […]
This year’s family conference hosted in partnership with Simons Searchlight is full of helpful information, scientific updates, and practical tools to take home with you! Check out the Agenda for the General Session days and SETBP1 Family Meeting. General Sessions: Friday, July 30 1:00pm-4:00pm Eastern Standard Time & Friday, August 6 1:00pm-4:00pm Eastern Standard Time […]
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 […]
