The SJIA Foundation is a patient driven foundation whose mission is to find a cure for Systemic Juvenile Idiopathic Arthritis (SJIA) and Macrophage Activation Syndrome. Learn more here.
We are organizing NextGen22 conference to bring together researchers clinicians and regulator to discuss Clinical Trials and options for refractory patients. Learn more here.
In order to include the patient voice in these discussions, we will include a few SJIA Ambassadors who can participate in conference discussions where appropriate (they might be asked to share their experiences with the disease & treatments), and give feedback to plans for new research studies and clinical trials.
We plan to include Ambassadors from different parts of the world, with different types of disease complications, and from different research centers that the SJIA foundation plans to work with.
Please answer questions below to apply to be an Ambassador for NextGen. We will choose based on following criteria:
in advocating for SJIA / Still's Disease.
Families with a
who can share their story and benefit from discussions about clinical trials/therapies discussed. (A refractory case is when disease is not controlled after multiple medications and two years, repeated cases of MAS or organ involvement like lungs)
that we need patient representatives in.
Interest in a
science based approach
towards SJIA treatments, with focus on new medications, participating in research studies and clinical trials (there will be no discussions about diet and herbal treatments).
SJIA Ambassadors bring specific experiences and expertise that we need in certain sessions. We will let each person know which session or two we would love for them to join.