Building a Unified Voice in Patient Advocacy
Core Findings
Partnership builds POWER
Uniting advocacy groups creates a stronger, more credible voice for patients
Patient-centered design WINS
Building resources around real experiences fosters trust, engagement, and community ownership
Sustainability MATTERS
True advocacy requires long-term collaboration, not one-time activation
Situation
The chronic graft-versus-host disease (cGVHD) community faced a core problem: disconnection. Multiple small organizations were working independently, each with unique goals and resources, but no cohesive platform to align their efforts.
Patients often felt invisible, clinicians lacked consolidated educational resources, and awareness remained low among policymakers and the public
Solution
RevHealth built a cohesive national advocacy platform that could unite disparate voices, give patients a credible resource hub, and establish a sustainable framework for education and empowerment.
- Stakeholder Mapping & Research: Identified and engaged leading patient organizations, clinical experts, and survivors to ensure equitable representation.
- Collaborative Insight Building: Established a multidisciplinary advisory council to define shared values, language, and goals grounded in lived experience.
- Mission & Identity Development: Co-created a unified mission statement and design system reflecting the community’s collective voice and optimism.
- Digital Engagement & Awareness Activation: Launched a central website, storytelling campaign, and the first GVHD Awareness Day to mobilize the community and broaden visibility.
- Sustainability & Independence: Designed an operating model that transitioned the Alliance toward independent governance for long-term continuity.
Results
The GVHD Alliance became a blueprint for rare-disease advocacy, proving that collaboration can drive lasting impact.
7 national organizations aligned under a shared mission and outreach strategy
GVHD Awareness Day gained national traction, establishing a recurring moment for education and recognition
Thousands of patients and caregivers now access consistent, trusted resources through the Alliance platform
The framework is now being replicated in other rare disease areas and explored for international expansion