Resources

 

This is your starting point to learn about the genetic disorders that Simons Searchlight studies. We regularly update these pages with new research and information for families.

Understanding Genetics & Conditions

Build a foundation to better understand your diagnosis and related topics.

• What We Study – Overview of the genetic variants studied in Simons Searchlight
• Genetics FAQ – Learn about chromosomes, genes, CNVs, and genetic variants
• What Is Autism? – Overview of autism spectrum disorder
• Related: “Your Questions About Autism, Answered” (from SPARK)

Getting Started with Simons Searchlight

Everything you need to know about participating in research.

• Frequently Asked Questions – About the study, participation, and account registration
• Data Sharing – How your information is shared and used in research

Family Guides & Life Navigation

Practical, supportive resources for navigating life with a rare genetic condition.

• A Family Guide: Navigating Life After a Rare Genetic Diagnosis
• A Family Guide: Understanding Genetic and Clinical Diagnoses
• Navigating Menstruation: Support for Caregivers of Individuals with Disabilities
• Guardianship Resources – Supporting continued research participation into adulthood

Community & Support Resources

Connect with trusted organizations, tools, and broader support networks.

• Librarey – A search-based platform connecting families and researchers to resources
• Rare Epilepsy Network (REN) – Collaborative network supporting individuals and families affected by rare epilepsies
• National Organization for Disorders of the Corpus Callosum (NODCC) – Provides education, advocacy, and community for individuals with corpus callosum disorders
• Courageous Parents Network – Offers videos, guided pathways, and resources for families of children with serious medical conditions

Educational Tools & Learning Resources

Explore tools designed to support different learning styles and developmental needs.

• Multisensory Educational Materials – Resources that engage touch, sight, and sound
  • Do2Learn– Tools for learning and behavior support
  • Institute of Education Sciences– Evidence-based education resources
  • Strategies to Address Emotional & Behavioral Challenges

Tip: Occupational therapists can provide personalized strategies for multisensory learning.

Research & Community Voices

Hear from researchers and community leaders shaping the field.

• Researcher Profiles – Insights from scientists using Simons Searchlight data
• Leading the Way Interviews – Stories from patient advocacy group leaders

Videos & Stories

Learn through real experiences and expert insights.

• Educational Videos (YouTube) – Topics include research participation, family stories, and researcher highlights