“I have attended many conferences, and this conference has been the first one I have ever been sad to end. However, I’m excited to share what I have learned.”

“Meeting all the other attendees and hearing about their story and experiences and learning more about the caregivers and patients.”

Meeting Dates: September 27-28, 2025
Location: Louisville, KY
Hotel: The Brown Hotel

The purpose of the Summit is to assemble patients and caregivers to strengthen our FCS community while providing attendees with resources and other helpful information. As an attendee, our goal is for you to leave the Summit with the knowledge that you are supported by the FCS Foundation and a community of families who are all experiencing similar challenges to living with FCS.

The agenda will include presentations from select members of the FCS Board of Directors and the Medical Advisory Board. We will also have interactive discussions about nutrition, a mental health session with a psychologist and rare disease advocate and insights from our industry partners, IONIS Pharmaceuticals and Arrowhead Pharmaceuticals.

Registrations are limited to 25. All attendees 18 years of age and older must submit an individual registration. The registration deadline is
September 1, 2025.

Once you complete the online registration, you will receive an email with the Travel Form to complete along with additional information outlining costs the FCS Foundation will cover for the attendee (patient and/or caregiver), including:

• One night accommodation at the Brown Hotel (September 27, 2025) 
• Airfare 
• Meals during Summit

If you have questions regarding the 2025 FCS Foundation Patient & Caregiver Summit, 
please email editor@livingwithfcs.org