RAO Network

Systemic JIA Foundation

Rashmi Sinha speaks at a lectern
Rashmi Sinha speaks to patients, scientists, clinicians, pharmaceutical companies, and FDA representatives at the NextGen Research in SJIA & MAS Conference, Systemic JIA Foundation’s annual research conference. Photo courtesy of Systemic JIA Foundation.

Igniting the field to accelerate research

Science happens at its own pace, often with slow movements toward new treatments. Rare disease patients and advocates have a different level of urgency that can drive the field to move at an accelerated pace.

This urgency inspired Rashmi Sinha and Jonathan Boutelle to found the Systemic JIA Foundation in 2015, three years after their son was diagnosed with systemic juvenile idiopathic arthritis (SJIA). SJIA is a serious and sometimes lethal childhood disease that can affect multiple organs. For many SJIA patients, the disease can be controlled with biologics medications, though no cure exists. For Rashmi and Jon’s son, the disease did not respond to commonly used medications, leading them to search for new treatments.

The Systemic JIA Foundation recognizes that there’s no playbook for how to solve a rare disease. The nonprofit is most excited about learning from other organizations in the Rare As One Network and having partners on this journey. Rashmi and Jonathan know that researchers and clinicians are key to finding a cure, and they hope to use learnings from other Rare As One participants to supercharge their efforts to find one for SJIA.

Rare disease patients and advocates have a different level of urgency that can drive the field to move at an accelerated pace.

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