A clinical-stage biotechnology company developing a therapy for a rare disease faced a significant challenge: there was no dedicated patient advocacy organization serving the community. Without a central resource for education, support, and engagement, opportunities to raise disease awareness, facilitate clinical trial education, and support participant recruitment were limited.
As the program advanced from Phase 2 to Phase 3 development, the sponsor needed a sustainable way to engage patients, build trust, and create long-term infrastructure for community support.
PAS partnered with patients, healthcare centers, and leading key opinion leaders (KOLs) to unite a fragmented patient community and establish an independent nonprofit advocacy organization. The initiative included development of organizational governance, leadership structure, educational programming, patient support resources, website development, and planning for the organization’s inaugural patient meeting.
To ensure long-term sustainability, PAS also helped secure additional funding and created a strategic framework designed to support continued growth and community impact. The resulting organization was built to serve as a trusted resource for patients, caregivers, researchers, and healthcare professionals.
The newly established organization quickly became a trusted source of education, support, and clinical trial information for patients and caregivers. The platform helped connect patients with valuable resources while creating opportunities for greater community engagement and disease awareness.
The sponsor benefited from increased visibility, stronger relationships with the rare disease community, and enhanced awareness of clinical research opportunities. These efforts supported recruitment during both Phase 2 and Phase 3 development while strengthening the sponsor’s reputation and long-term corporate value.
Category:
