Simons Searchlight studies over 150 genes that cause rare neurodevelopmental disorders, and our list is always expanding. All of these conditions are rare, and right now we all have more questions than answers. In order to improve the lives of people with these rare conditions, we must work together to share information and do research that will help us uncover the answers to important questions.
When you participate, your experiences help the medical and scientific communities understand your rare genetic disorder. So, even though your gene or genetic variant is rare, your unique experience is the key to unlocking meaningful scientific advancements.
Your participation may not lead to immediate treatments, but your involvement can lead to important insights for your family and future families. By comparing the experiences that people have with a given condition, we can learn what works and what doesn’t work, and what issues to look out for as people get older. We track health and development over time because things change over the life course. We want to help answer questions about what to expect in the future for people with these rare disorders. We also make it easy to connect you with researchers who want to include you or your child in research studies and clinical trials.