Location & Date:
When:
Thursday, Oct 3rd (8:30am – 5:30pm) & Friday, Oct 4th (8:30am – 4:00pm)
Location:
Serendipity Labs,
4500 E W Hwy #125, Bethesda, MD 20814, Bethesda, MD
Goals
The goal of this meeting to accelerate search for therapies for refractory Systemic JIA, recurrent MAS and associated lung disease. We will be bringing together experts who research these areas, clinicians who treat such patients, and parents of children, with the goal of encouraging robust discussion about unmet needs, new therapies and clinical trials.
A specific focus of the conference is the treatment of recurrent MAS and associated lung disease. Therapies discussed will include Jak-Inhibitors (including newer, more targeted Jak-Inhibitors), IL18-Binding Protein, and Emapalumab.
The conference is also hosting the first ever meeting of Resyst: an international project to investigate refractory SJIA.
Participants will include
- Scientists focused on SJIA, MAS and lung complications
- Clinicians treating such patients
- Parents of children with recurrent MAS & refractory SJIA
- Representatives from FDA
Conference Participants:
Physicians & Researchers
- Adriana DeJesus (NIAID, NIH)
- Alexei Grom (Cincinnati Children’s)
- Bas Vastert (UMC Utrecht)
- Beth Gottlieb (Northwell Health, NYC)
- Fabrizio DeBenedetti (Bambino Gesù, Rome)
- Grant Schulert (Cincinnati Children’s)
- Hermine Brunner (Cincinnati Children’s)
- Massimo Gadina (NIAMS, NIH)
- Mona Riskalla (Univ. of Minnesota)
- Rae Young (Sick Kids, Toronto)
- Raphaela Goldbach-Mansky (NIAID, NIH)
- Sampath Prahlad (Emory Univ.)
- Sara Alehashemi (NIAID, NIH)
- Scott Canna (Univ. of Pittsburgh)
- Shan Chandrakasan (Emory Univ.)
- Yuki Kimura (Hackensack, New Jersey)
FDA
- Suzette Peng
- Rachel Glaser
SJIA Parents
- Anna Carlson
- Emily Schumacher
- Kari Cupp
- Kate & Jonathan Pierce
- Leah Bush
- Regina Minerva
- Zulayka Martinez
Other Orgs
- Wendy Costello, ENCA
- Vincent Delgaizo, CARRA
Conference Organizer: SJIA Foundation
About the SJIA Foundation: The conference is organized by the Systemic JIA Foundation as part of their efforts is to find a cure for Systemic JIA. The foundation takes a startup approach to finding new treatments – organizing conferences, conducting surveys, making seed grants, creating web-based registries, working with researchers and parents to accelerate the search for a cure. This conference is inspired by drug-discovery conferences by other rare disease foundations which have successfully accelerated drug development by bringing together patients, researchers, pharma and regulators.
Contact US:
All questions about the conference should be directed to Rashmi Sinha: email.
3584 Outlook Avenue, Cincinnati OH, 45208