For Rare Disease Day 2023, the Systemic JIA Foundation is hosting a
SJIA & Still’s Patient/Caregiver Social Hour
Saturday Feb 25th 2023
10:00am – 11:30am EST | 3:00pm – 4:30pm UTC
Bring a cup of coffee (or tea)! Learn about the Systemic JIA Foundation. Hear an expert talk and some patient stories. And best of all, connect with other patients in breakout groups.
Schedule for Social Hour
10am – 10:10am: Introduction to SJIA Foundation
10:10am – 10:25am: Intro to AOSD: Dr. Bella Mehta (Hospital for Special Surgery, New York)
10:25am – 10:40am: New Meds for SJIA: Dr. Grant Schulert (Cincinnati Children’s Hospital, Cincinnati, OH)
10:40am – 10:45am: Overview of Clinical Trials & Open Research Studies in SJIA / AOSD
10:45am – 10:55am: Patient Stories from SJIA & Still’s Patients
11:00am – 11:20am – Breakout Groups: Round 1
Older Teens & Young adults (15 & up)
Newly Diagnosed
Managing Macrophage Activation Syndrome
Role of Physical / Occupational Therapy / Counselling etc in Managing Chronic Disease
AOSD Patients Chat
Managing SJIA-Lung Disease
11:25am – 11:55am – Breakout Groups: Round 2
Managing Stubborn Joint Issues (arthritis, hypermobility etc.)
Managing organ complications (GI / Liver / Kidney / Heart)
Newer Meds, such as jak-inhibitors / emapalumab / IL18 inhibitors
Parent / Caregiver Support Chat
AOSD Patients Chat
Bone Marrow Transplantation for Refractory SJIA