SETBP1 Society is pleased to announce the availability of several new resources.

SETBP1 Disorder Information Sheet

SETBP1 Society is proud to announce the release of our SETBP1 disorder Information Sheet. This is a helpful resource for medical professionals, therapists, education providers, newly diagnosed families, and anyone who wants to familiarize themselves with SETBP1 disorder. Check out our Information Sheet! Read it!

SETBP1 Disorder guide

NORD, National Organization for Rare Disorders, with approval from Dr Bregje van Bon, a clinical geneticist in Nijmegen, Netherlands at Radboud Medical Center, and collaboration with SETBP1 Society produced this valuable resource for our community. Read It!

2020 SETBP1 Virtual Family Conference

Our 2020 Virtual Family Conference in August hosted by Simons Searchlight was engaging and educational for all attendees. The full presentation is viewable HERE!

SETBP1 Families
VIRTUAL CONFERENCE AGENDA
Simons Searchlight Family and Research Conference

General Session 1
Friday, August 7
2:00 PM – 4:00 PM Eastern Time
Watch General Session 1

Introduction by Wendy Chung, MD, PhD
Challenging Behaviors by Karen Bearss, PhD
Genetics 101 & How to read your lab report by Julian Savatt, MS, LGC & Rebecca Sheedy, LGC

SETBP1 Meeting
Sunday, August 9
4:00 PM – 6:00 PM Eastern Time
SETBP1 Meeting

Simons Searchlight SETBP1 Registry Results by Jennifer Bain, MD, PhD
Navigating the Challenges of ADHD in SETBP1 Disorder by Siddharth (Sid) Srivastava, MD
SETBP1 Society Update by Haley Oyler
6:00 PM – 7:00 PM Eastern Time
SETBP1 Family Chat – Families will stay on the line after the SETBP1 Meeting ends to connect and share. This portion will not be recorded.

General Session 2
Friday, August 14th
2:00 PM – 4:00 PM Eastern Time
Watch General Session 2

Introduction by John Spiro, PhD
What is Simons Searchlight by Misia Kowanda, MSc, CGC & LeeAnne Green Snyder, PhD/
Introduction to SFARI Science by John Spiro, PhD
iPSCs by Julia Sommer, PhD
Animal Models by Alice Luo Clayton, PhD& Britter Gundersen, PhD
Gene Therapies by Wendy Chung, MD, PhD
Clinical Trials by Paul Wang, PhD

Check out other SETBP1 resources HERE!