Connect with an LGS Patient Navigator or Family Ambassador
Your situation is unique, but it doesn’t need to be isolating.
The LGS Foundation firmly believes that everyone living with LGS should have access to the information, resources, and support they deserve. Furthermore, this includes information on how to connect with others.
Our free, confidential Patient Navigator & Family Ambassador program aims to connect you with emotional and practical support at every step of the journey, whether that is learning more about LGS, talking to another parent, learning about clinical trials, navigating transitioning from child to adult healthcare, identifying digital resources, finding assistance programs, navigating insurance questions, preparing for your first visit with a child neurologist, and more.
Our Navigators and Ambassadors are here for you!
Frequently Asked Questions
LGS Foundation’s Patient Navigator & Family Ambassador program consists of emotional, relational, and practical support from a peer who has had similar experiences navigating the LGS journey and living with a rare disease.
Peer support is a powerful opportunity to get advice and mentorship from someone who has real-life experiences similar to what you may be facing. Whether you need advice on the next steps, are looking for guidance with a specific challenge, or simply need to voice your fears and stresses to someone who understands.
There are no wrong questions. We might not always be able to give you the answer you’re looking for straight away — in some cases, there may not even be a single right answer — but we’re here so you don’t have to look for the answers alone.
*Please note that we can’t provide medical advice.*
Our Patient Navigator & Family Ambassador Program is free to parents, caregivers, and siblings impacted by LGS.
Fill out our website submission form with some details about who you are and what you need. An LGS Foundation representative will follow up within a few days.
Join our Patient Navigator & Family Ambassador team.
For more information about our Patient Navigator & Family Ambassador Program, email FamilySupport@lgsfoundation.org.
The information here is not intended to provide diagnosis, treatment, or medical advice and should not be considered a substitute for advice from a healthcare professional. The content provided is for informational purposes only. LGS Foundation is not responsible for actions taken based on the information included on this webpage. Please consult with a physician or other healthcare professional regarding any medical or health-related diagnosis or treatment options.
Updated 10/4/24 (SC)