Bionews is excited to announce our participation in the World Orphan Drug Congress 2025. This year’s presentation delves into innovative strategies to engage rare disease patients online by exploring practical approaches to reaching these communities, delivering unmatched value, and sharing a taste of the “secret sauce” behind our organic community growth—all supported by data from the 2024 National Rare Disease Survey, with a spotlight on myasthenia gravis.
Bionews will be participating in the World Orphan Drug Congress 2025 to be held April 22-24 in Boston. Marcella Debidda, PhD, president of Bionews Patient Insights and Clinical Solutions, and Ethan Ash, senior VP of Business Development, will be presenting the session “Engaging the rare disease patient online.”
The World Orphan Drug Congress brings together industry leaders, healthcare professionals, patient advocates, and policymakers to discuss the latest advancements and challenges in rare disease therapies.
Debidda and Ash’s presentation will focus on the innovative strategies Bionews has developed to engage and reach rare disease patients online, how value-driven interactions strengthen our relationships with patients and industry partners, and how authentic storytelling, peer-to-peer communication, and ongoing dialogue, translate into significant growth across Bionews rare disease platforms—demonstrating the potential of digital spaces to unite and empower.
Lastly, drawing on insights from our national survey, we’ll highlight findings specific to myasthenia gravis. This data-driven approach informs our community-building tactics, offering valuable perspectives for pharma sponsors and advocacy partners aiming to optimize their outreach.
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Join Us at WODC 2025
Marcella Debidda, PhD, President, Patient Insights & Clinical Solutions at Bionews, will lead the presentation alongside Senior VP of Business Development, Ethan Ash. Attendees will gain practical strategies for patient engagement, recruitment, and data-driven decision-making in the rare disease landscape.
Follow @Bionews on LinkedIn for the latest updates on our participation at #WODC2025, and join the conversation using #Bionews.
For more information about partnering with Bionews for clinical trial recruitment solutions, email [email protected] or visit our clinical solutions page.
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About the Author
MARCELLA DEBIDDA, PhD
President, Patient Insights & Clinical Solutions
With over 15 years of expertise in patienhatt 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.
Media Contact: [email protected]