SJIA Foundation
@sjiafoundation
Followers
585
Following
660
Media
149
Statuses
734
Our single and urgent mission is to find a cure for Systemic JIA, Adult Onset Still's Disease and MAS.
Joined February 2015
One thing that would move the needle for SJIA / MAS diagnosis and treatment is a universal / reliable way to measure IL18, and a test that rheums can order. How do we get there? cc @canna_lab @GrantSchulert @Basvastert @ChristophKessel @claudiabrac
2
3
17
Big news in the world of SJIA / Still's Disease. Emapalumab (gamifant) approved by FDA for MAS Thanks to everyone - the docs, patients & Sobi who worked towards this. SJIA Foundation is grateful to have been a part of this fight https://t.co/Qk2daAJcEd
thepharmaletter.com
Swedish Orphan Biovitrum, the Nordic biotech also known as Sobi, on Friday announced that the US Food and Drug Administration (FDA) approved Gamifant (emapalumab-lzsg) for a new indication, edging...
0
1
8
If you want to hear the inimitable Dr. Canna speak, then join us tomorrow. Still a few hours to register (its free!) https://t.co/gbnmdWx4QK
I heard some rowdy #IL18eenagers are planning to liven up tomorrow's @sjiafoundation #RareDiseaseDay event. @rashmi @lupapaleopeixo1
0
1
5
I heard some rowdy #IL18eenagers are planning to liven up tomorrow's @sjiafoundation #RareDiseaseDay event. @rashmi @lupapaleopeixo1
Coming up tomorrow. Be there!
0
2
8
The truth is that the scientific process is horribly inefficient and wasteful. But the solution is NOT cutting funds and it’s NOT top down guidance of what should be studied. Instead, we should revolutionize how we publish and improve peer review.
50
93
731
Coming up tomorrow. Be there!
For SJIA/Still’s patients, rare disease day event organized by Systemic JIA Foundation.
0
1
0
At the Palo Alto Stand Up For Science gathering. Great to see energy. Mixed crowd including scientists from Stanford. Cars passing by honking which leads to cheer every time. My son's life was saved by science and I am here to stand with others. #StandUpForScience
4
30
176
SJIA/Still's Rare Disease Day ahead! Social Hour for patients and caregivers on March 8, 2025, 10:00 AM ET. Register on link below. #cureSJIA #rarediseaseday 🔗 https://t.co/LAymjosLP9
0
4
9
Happy Mother's Day to all the mothers out there caring for their kids with a rare disease. I hope you get to have a restful day filled with laughter and joy. #MothersDay
#curesjia
0
1
7
Congratulations to @GrantSchulert and Yuki. We are excited that the effort to understand and treat SJIA-lung disease will benefit from this grant.
More than six years ago I started sketching out an observational study of #SJIA lung disease. Four years later (#COVID, other projects, life) the idea was revived as a partnership with Yuki Kimura of @HMHNewJersey using the @carrainc Registry.
0
0
8
Daniel Horton about differential rates of successfully stopping meds in different JIAs #cabc2024
0
0
3
Dilan dassanayake fom Sick kids discussing how monogenic diseases can help understand pathways for more complex diseases like SJIA. #cabc2024
1
2
7
Impact of JIA. A health economist perspective about the total costs including the layers of the iceberg generally not looked at. #cabc2024
0
1
1
At the UCAN conference in Toronto. @DrRaeYeung introducing the conference and the research partnerships that power this conference and project
0
3
7
We all stand on the shoulders of giants. I knew Dr. Elizabeth "Betsy" Mellins as dedicated, keen, rigorous, & kind. Her contributions to #pedsrheum & antigen presentation were giant. https://t.co/TRL3CYIDI7
@carrainc @sjiafoundation
med.stanford.edu
2
3
21