Here's some of the things they've done that we heard about at Lupus 2017.
There's a book, available in multiple languages, to explain lupus to children:
There's an app, again available in multiple languages, to track medications, test results, pills, and all of the other information we carry from doctor to doctor, and the reminders for when we have to take pills, go to a doctor's appointment, go for a test, etc.
And there's an exercise video, produced in conjunction with two doctors who specialise in sports medicine.
To find out more about this fantastic group, and the wonderful resources they have produced, go to their website: http://syamsidhuhafoundation.org/id_ID/