Living with IgG4-related disease (IgG4-RD) can feel overwhelming, and getting a diagnosis can be a real challenge. The IgG4ward! Foundation is an international patient advocacy group dedicated to educating both patients and clinicians and bridging gaps in care for those living with IgG4-RD.
For most people, high-dose steroids like prednisone are the first step in calming inflammation. We know these medicines work, but they can bring side effects that are confusing or hard to manage. And while new steroid-sparing treatments are on their way through the approval process, many patients need extra support today.
Thanks to IgG4ward!’s dedication, Sam is now featured in their newsletter, highlighted on their website, and showcased at community gatherings, providing practical support at your fingertips.
Why patient involvement matters
Katharine Provencher, Director of Patient Advocacy for the IgG4ward! Foundation, emphasizes that by partnering with Sam, IgG4ward! ensured that people living with this rare disease had a voice in how the companion was designed and what content it delivers.
“Most patients start on high-dose steroids, which often bring a range of side effects that can be hard to manage. They tell us these effects aren’t always fully explained, and they urgently need practical tools that support them both medically and emotionally.”
Through patient focus groups and pilot testing, IgG4ward! members helped refine Sam’s features, making it intuitive to track side effects and learn about how to cope with them in a way that fits real-world needs.
Empowering patients for the journey ahead
Steroids will remain a key part of managing IgG4-related disease for the foreseeable future. Thanks to IgG4ward!’s patient-driven advocacy, Sam is becoming an indispensable resource, helping people stay informed, track side effects, and feel supported every step of the way.
Visit the IgG4ward! Foundation to join the IgG4-RD community, driving better care and brighter hope.