In the last month, while Covid rages, many SJIA Foundation activities (similarly to that for other rare disease organizations) have come to a grinding halt. This time of the year is typically a busy time – planning the SJIA Family conference which is a big boost to both our community and research. That is now postponed. Also, many research labs we collaborate with have been shut down. The SJIA patient second opinion appointments that we help make have been stopped.
After much deliberation, we have decided to switch to a digital strategy while Covid-19 related lockdowns are in effect. This means that we will pick up activities that can be done online with renewed energy. Below is the plan.
- We will start periodic community calls via Zoom for SJIA & AOSD parents / patients, starting with the first one this Friday. These will be informal calls, with some discussion and breakout groups. The first one will be the week of April 6th – specific date to be announced soon.
- Regular Talks & Panels with SJIA & AOSD experts on topics like managing disease in the time of Covid, what we know about SJIA-LD. We will be announcing the first one in this series soon.
- Online discussions for Physicians & Researchers on current topics.
- Start sending out regular newsletters to update community on topics like new developments in research, updates on fundraising etc.
- Grow SJIA Foundation Contact Registry: We have a contact registry with 300 patients. We will be working on creating a Registry Ambassador program to recruit community members to grow registry, answer member questions etc. Our goal is to grow registry to 500 in the next few months.
- Support research projects digitally: While many research labs are shut down, we will help SJIA/AOSD researchers with any online research projects – help them get community feedback – help them organize focus groups, get responses to surveys etc.
Stay safe everyone, and see you at one of our online events!