Resources

SETBP1 Resources

Sister Organizations

Chromosome 18 Registry and Research Society – This 501(c)(3) nonprofit organization helps people with chromosome 18 abnormalities overcome the obstacles they face so they may lead happy, healthy, and productive lives. Annual conferences are held in July.

The Childhood Apraxia of Speech Association of North America (CASANA) – The Childhood Apraxia of Speech Association is a 501(c)(3) nonprofit publicly funded charity whose mission is to strengthen the support systems in the lives of children with apraxia so that each child is afforded their best opportunity to develop speech and communication. The annual National CASANA Conference is held in July.

The Dyspraxia Foundation –  This foundation is a 501(c)(3) nonprofit committed to helping individuals with dyspraxia, a global motor-planning disorder.

Partners

Global Genes Rare Foundation Alliance Member – Global Genes RARE Foundation Alliance is made up of over 300 disease foundations that have committed to collaborating with Global Genes and other nonprofit foundations in order to create a stronger, collective voice in the rare disease community.

Reading Material

Educational Material

  • View Slides from our 2018 SETBP1 Virtual Family Conference
  • Watch our 2018 SETBP1 Virtual Family Conference
  • Learn more about the different conditions caused by SETBP1 mutations
  • Learn more about medical management recommendations of SETBP1 disorder from Dr. Siddharth Srivastava, a pediatric neurologist from Boston Children’s Hospital
  • Listen to Dr Siddharth Srivastava, a pediatric neurologist from Boston Children’s Hospital, talk about the features of SETBP1 disorder.
  • Listen to Dr Wendy Chung, the principal investigator with Simons VIP, talk about their findings from individuals with SETBP1 disorder from the Simons VIP Connect research study.