Overview
About this Module To be an effective partner in SDS research, it helps to speak the language — or at least understand the key concepts that come up in research conversations, clinical discussions, and treatment decisions. This module introduces the biology of SDS at the level you need to engage meaningfully with researchers and clinicians. Not a medical school course — just the core concepts that explain what SDS is, why it affects so many different organ systems, and what researchers are working to change. If you have been living with SDS or caring for someone who has, you will likely find that some of this validates things you already know. The goal is to give that experience a framework. What you will be able to do after this module: * Explain what genes are and what they do in plain language * Describe what the SBDS gene does and what happens when it does not work correctly * Understand why SDS affects multiple organ systems * Explain how SDS is inherited and what that means for families* Connect this knowledge to ongoing research questions in SDS
You can also join this program via the mobile app. Go to the app