Bionews wrapped up an energizing week at the World Orphan Drug Congress 2025 in Boston, where we had the opportunity to share the evolution of how we engage rare disease communities online.
The presentation, led by Marcella Debidda, PhD, and Ethan Ash, senior VP of Business Development, spotlighted Bionews’ new approach to rare community growth: we called it Community-Powered Awareness—a people-first model grounded in the unique dynamics of the rare disease ecosystem through content, data-driven insights, trust, and real connections.
Drawing on real-world examples and insights from the 2024 National Rare Disease Survey, including data specific to Myasthenia Gravis, the session highlighted how genuine storytelling, peer dialogue, and continuous listening shape stronger engagement—and ultimately, better outcomes for patients and sponsors.
WODC was also a valuable opportunity to connect with others across the rare disease space. From breakout sessions to informal conversations, we had productive discussions with pharma partners, advocates, and patient leaders.
We were proud to be part of those dialogues and to explore future collaborations grounded in shared purpose and look forward to the 2026 edition.
Let’s Keep the Conversation Going
Want to learn more about our Community-Powered Awareness model and how it can support your engagement with the rare community?
Reach out to [email protected]
Follow us on LinkedIn @Bionews for post-WODC reflections and future updates.
#WODC2025 #Bionews #CommunityPoweredAwareness
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About the Author
MARCELLA DEBIDDA, PhD
President, Patient Insights & Clinical Solutions
With over 15 years of expertise in patient advocacy, clinical research innovation, and patient-centered strategies, Dr. Debidda is committed to championing the patient voice to transform healthcare. Her experience spans from designing and executing patient engagement and recruitment initiatives to foster collaborations with advocacy groups across more than 50 rare conditions.
In leadership roles at organizations such as Harvard Clinical Research Institute and Science 37, she pioneered patient-powered trial designs, remote clinical trial campaigns, and sustainable community development. Dr. Debidda also advises pharmaceutical companies, academic and nonprofit organizations, and startups on effective patient engagement and co-creation with patients.
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About Bionews
Bionews is a digital health solutions company dedicated to empowering more than 50 rare disease communities with trusted information, news, and connections. Since 2013, we’ve been committed to serving patients and elevating their voices. Our motto is “For Rare, By Rare.” With more than 50% of our team living with or caring for someone with a rare condition, we understand the unique challenges and needs of these communities. We’ve built a network of more than 500,000 registered members actively seeking news, clinical information, and sharing experiences. This creates a safe space for peer support, connection, and learning. Bionews offers a comprehensive platform serving a wide range of rare diseases, from larger condition specific communities including pulmonary fibrosis to smaller communities such as AADC.