Giving Tuesday – December 3rd

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 […]

SETBP1 Disorder Grants Under Review!!

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, […]

Million Dollar Bike Ride – Join our SETBP1 Strong Team

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 […]