Program areas at Systemic Jia Foundation
Systemic Jia Foundation plans several types of fundraising: 1) donations from families with sjia: the Systemic Jia Foundation will reach out to families with sjia to both contribute and raise funds for the benefit of the Systemic Jia Foundation. The Systemic Jia Foundation will raise funds online, using fundraising sites such as crowdrise, stripe, facebook or fundraising functionality on our own website.2) event sponsorships from pharma companies: for any events the Systemic Jia Foundation organize, the Systemic Jia Foundation will reach out to pharma companies who are interested in sjia to give sponsorships at different levels to support the event.3) general: the Systemic Jia Foundation will undertake additional fundraising from a variety of sources including mail, email, personal and phone solicitations. The organization will create proposals and other materials that will be necessary to submit in order for the organization to receive grants and donations.4) grants from other charitable organizations. The Systemic Jia Foundation will raise additional funds from other charitable foundations.
Grant to cincinnati children's hospital & harvard universitythis grant has been provided to fund the research, conducting an initial observational study for the collection of biospecimens and patient data and establishing a clinical and scientific research network (the "research network"), each for the study of Systemic juvenile idiopathic arthritis.
Conferences organized or attended in 2023pres congress 2023 attended from september 28 - october 1, 2023 at rotterdam, the netherlands.the Foundation organized a booth at the european paediatric rheumatology congress held at rotterdam, the netherlands between september 28 - october 1, 2023. Rare disease day organized virtually on february 25, 2023. The purpose of this is to educate paricipants on sjia, still's disease and mas. Hear experts talk on latest therapies for sjia, still's disease and mas with special emphasis on clinical trials and also help participants connect with other patients and caregivers. Free cme lecture series for secondary hlh/mas organized virtually on september 7, 2023 and october 11, 2023. This lecture series is designed specifically for healthcare providers including phsycians, physician assistants, nurse practitioners and registered nurses. The series examines current medical treatments, controversies and discussion on management of secondary hlh including mas.