Rare Disease Day 2026 Talk Series
To mark Rare Disease Day 2026, we are hosting a Patient & Family Webinar Series: Living with SJIA / Still’s Disease--a two-part series created to support and educate our community.
Learn More
February 28, 2026
10:30am – 11:30am EST // 4:30pm – 5:30pm CET
March 14, 2026
10:30am – 12:00pm EST // 4:30pm – 6:00pm CET
SJIA & Still's in Europe
Watch the recording of our European event with patients, families, and physicians from Europe sharing stories, conversation, and the latest Still’s/SJIA research and treatment.
Learn More
January 10th, 2026
10:00am – 12:00pm EST // 4:00pm – 6:00pm CET
Recent Events
In our mission to find a cure, we bring researchers, patients, clinicians, pharma and regulators together at our events.
Rare Disease Day 2024
Organized by the SJIA Foundation to celebrate global Rare Disease Day... read more
CME Lecture Series for MAS / Secondary HLH
In collaboaration with Clinical Viewpoints®, we organized a series of CME lectures by MAS experts. Lectures were free and open to doctors from all over the world. s... read more
SJIA Family Education Day at Cincinnati Children's
Meeting brought together researchers, patients, FDA, EMA and Pharma. Was virtual due to Covid. read more
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🌍 Call to European patients: Interested in attending PReS 2026?![]()
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The PReS Annual Scientific Meeting is the largest European conference dedicated to pediatric rheumatology, bringing together healthcare professionals, researchers, patients, and advocacy organizations from around the world to share the latest research, advances in care, and patient perspectives.![]()
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www.pres.eu/pres2026![]()
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The Systemic JIA Foundation is looking for patients and caregivers from Europe who may be interested in attending PReS 2026 in Belgrade, Serbia, from 16–19 September 2026, and representing the Foundation during the meeting.![]()
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This is a unique opportunity to:![]()
💙 Connect with the European systemic JIA / Still's disease community![]()
🤝 Meet members of Systemic JIA Foundation and other caregivers![]()
🩺 Engage with pediatric rheumatologists, researchers, and healthcare professionals![]()
📚 Learn about the latest advances in pediatric rheumatology![]()
🌍 Help strengthen the patient voice within the international community![]()
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As places are limited, we are first seeking expressions of interest from members who would like to be considered.![]()
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If you are interested, send us a message here or please email luciana@systemicjia.org by 10 July 2026, including a few lines about yourself and your connection to systemic JIA / Still's disease.![]()
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We look forward to hearing from you!
Recently we delivered care packages to children receiving care at Cincinnati Children's039;s. 🏥![]()
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As a volunteer-driven nonprofit led by parents of children diagnosed with Systemic JIA, what makes this project so meaningful is that we've spent plenty of time in waiting rooms and hospital hallways ourselves. ![]()
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We know how exhausting and overwhelming those days can be, and we're grateful for the opportunity to connect with families and hope these care packages provide a reminder that they are not alone. 🧡
There will be an interesting webinar tomorrow from the PReS MAS/sJIA WP:![]()
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On the topic of risk factors for MAS in Still’s disease![]()
📅Tuesday, 21 April 2026 ![]()
🕐 10:00 - 11:00 / 16:00 - 17:00 CET![]()
Organised by the MAS/sJIA Working Party![]()
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Free registration link: ![]()
us02web.zoom.us/webinar/register/WN_Hd9IBqSRTJSCNDPFyJdc_Q#/registration![]()
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Agenda and Speakers:![]()
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16.00: Welcome and introduction![]()
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16.05 - 16.30: Immune signatures linking acute EBV infection and macrophage activation syndrome![]()
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Pui Y Lee - Division of Immunology, Boston Children's Hospital, Harvard Medical School, Boston, MA, USA![]()
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16.30 - 16.45: Risk factors for MAS in clinical practice: insights from the Dutch cohort studies![]()
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Bas Vastert - Center for Translational ![]()
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Immunology, Division of Pediatrics, University Medical Center Utrecht, Utrecht, the Netherlands![]()
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16.45 - 17.00: Discussion![]()
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Moderators:![]()
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Claudia Bracaglia - Division of Rheumatology, Ospedale Pediatrico Bambino Gesù, Roma, Italy![]()
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Christoph Kessel - Department of Pediatric Rheumatology & Immunology, WWU Medical Center (UKM), Muenster, Germany![]()
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Francesca Minoia - Fondazione IRCCS Ca' Grande Ospedale Maggiore Policlinico, Milano - Italy![]()
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See you there!
us02web.zoom.us
Agenda and Speakers: 16.00: Welcome and introduction 16.05 - 16.30: Immune signatures linking acute EBV infection and macrophage activation syndrome Pui Y Lee - Division of Immunology, Boston Children...Contact Us
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