Rashmi posted a survey on the facebook SJIA group and the Autoinflamatory disease group, to try to understand what medicines patients are using to control their disease. Here’s a map that shows the distribution of patients worldwide (results are still coming in so this will change over time).
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Latest From the Blog
Next Gen Meds conference Draft Agenda
Our next conference is next here! Here is the draft agenda for the Next Gen Meds conference. Its in Washington DC from October 21st to Oct 23rd.read more
Research Presentations from SJIA/ILD Conference
Here’s some more presentations from the Systemic JIA / ILD conference we helped organized at Stanford last month. These presentations go deeper into the cell biology than the previous set of presentations.read more
Clinical Presentations from SJIA / ILD conference
TrialReach: a new way to match patients with clinical trials
TrialReach is an interesting new service for matching clinical trials with patientsto develop their service for matching patients with available clinical trials. This is a really cool idea. One of the things holding back research into rare diseases like SJIA is getting enough participants into the clinical trials so that the research can happen.read more
Round up of clinical trials in Systemic JIA
We did a check on the awesome clinicaltrials.gov website recently to see what clinical trials were happening for SJIA. The good news is that there are 7 total: 4 that are currently recruiting for patients, and another 3 that are in the planning stages but haven’t started recruiting yet.read more
Ask your doctor if you are on the Consensus Treatment Plan for Systemic JIA
In July 2012, a group of researchers from CARRA (the Childhood Arthritis and Rheumatology Research Alliance) issued recommendations to help doctors standardize treatment plans for children with systemic juvenile idiopathic arthritis (sJIA). With the introduction of biologics in the past decade, the number of drugs used to treat sJIA has dramatically increased. Unfortunately, there are no studies directly comparing these drugs in patients with sJIA. Before these recommendations, clinicians used their own experience to develop treatment plans, resulting in a wide variation in drugs used, dosage, and timing, etc. The consensus treatment plan helps provide greater consistency in treatment. Perhaps more importantly, it will help researchers understand the best ways treat the disease.read more
Why we formed the Systemic JIA Foundation
In February of 2013, our healthy one year old son caught a cold which turned into fever and rash and lasted 15 days. After numerous blood tests, and time in the hospital, we received the diagnosis of Systemic JIA. Our lives were changed forever. Basically his immune system was attacking his body. The treatment was massive doses of steroids, and a new “biologic†drug called Anakinra, which required daily injections and was intended to disrupt his body’s inflammation response.read more
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