A sponsor developing therapies for IgG4-related disease (IgG4-RD) faced a critical engagement challenge: no established patient advocacy organization existed to educate, engage, or mobilize patients living with the condition. Without a formal patient community, opportunities for disease awareness, patient support, clinical trial education, and stakeholder engagement were limited.
The sponsor recognized that building trust within the community and creating a centralized patient resource would be essential to supporting both clinical development and future commercialization efforts.
PAS partnered with the sponsor and a leading IgG4-RD key opinion leader to establish the IgG4ward Foundation as an independent 501(c)(3) nonprofit organization. The foundation was created to provide patient education, peer support, health literacy resources, disease awareness programming, and clinical trial information for patients and caregivers.
The organization was intentionally designed to bring together patients, caregivers, clinicians, researchers, and advocates to create a stronger and more connected community while increasing access to credible disease and research information.
Following its launch at ACR 2024, the foundation rapidly became a trusted resource within the IgG4-RD community. The organization increased disease awareness, expanded patient engagement opportunities, and supported clinical trial awareness and enrollment efforts.
By helping establish a sustainable patient community infrastructure, PAS enabled the sponsor to strengthen trust and credibility within the disease community while supporting the development of what was described as the first FDA-approved treatment for IgG4-RD. The initiative created lasting value for patients, caregivers, researchers, and the sponsoring organization.
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