Joyce Kullman began volunteering with the Vasculitis Foundation (then the Wegener’s Granulomatosis Support Group) in 1995, and became executive director in 2002. The VF partners with patient support organizations, health care providers, and researchers to coordinate the care of patients, the dissemination of information, and the advancement of research on vasculitis.
She serves on the Steering Committee of the Vasculitis Clinical Research Consortium (VCRC) and has been directly involved in its steady and impressive development into the most important group conducting clinical research in vasculitis. Responsibilities include strategic planning, project development and implementation, patient recruitment and engagement, and cross-disciplinary and trans-Atlantic collaborations.
Joyce is Co-chair of the Rare Diseases Clinical Research Network Coalition of Patient Advocacy Groups (CPAG), which plans and coordinates ongoing network-level discussions and meetings for the 100+ patient groups in the RDCRN.
She also serves on the Vasculitis Patient-Powered Research Network (VPPRN) Steering Committee which provides the opportunity for patients with vasculitis to fully participate in all aspects of research, from study design through distribution of the data results.