Patient Engagement for Hemophilia B: Building a Stronger Community

For individuals and families affected by Hemophilia B, finding tailored support and educational resources has often been a challenge. At Rarity Health, we recognized the need for a patient-centric, community-driven initiative that fosters meaningful engagement and empowers the Hemophilia B community with the information they need.

The Collaboration

In partnership with Pfizer and key advocacy organizations, Rarity Health developed a comprehensive patient engagement strategy that leveraged multi-channel outreach, patient storytelling, and strategic advocacy partnerships. Our goal was to bridge the education and support gap within the Hemophilia B community while strengthening key relationships.

The Challenge

Historically, Hemophilia B patients have been underserved compared to their Hemophilia A counterparts. Many families and patients lacked access to disease-specific educational materials and peer support networks tailored to their unique experiences.

Our Approach

To address these challenges, we implemented a multi-faceted engagement plan, which included:

    • Recruiting key patient influencers to serve as trusted voices in the community.
    • Developing an innovative multidisciplinary advisory board to provide expert-driven guidance and insights.
    • Creating tailored, unbranded disease education programs designed specifically for the Hemophilia B community.
    • Leveraging digital and social media channels to amplify awareness and encourage ongoing dialogue.

The Impact

    • 25+ successful engagements with patient advocates and influencers, significantly expanding outreach.
    • Strengthened key relationships with Hemophilia B community leaders, fostering long-term collaboration.
    • Higher engagement levels and patient participation, demonstrating the growing impact of the initiative.

Through this initiative, we did more than create an engagement strategy—we empowered a community. By amplifying patient voices, fostering advocacy partnerships, and ensuring accessible education, we helped drive meaningful, lasting connections within the Hemophilia B space.