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