The session will highlight how BioNews’ large reach and access among rare disease patients, combined with strong community activation expertise and a patient-centric approach, accelerates trial recruitment programs. During the presentation, BioNews also will share key insights from our recent groundbreaking study, the 2024 Rare Disease Survey.

BioNews will be participating in the World Orphan Drug Congress 2024 to be held April 23-25 in Boston. Marcella Debidda, PhD, president of BioNews Clinical, and Ethan Ash, senior VP of Business Development, will be presenting the session “Optimizing Patient Recruitment by Leveraging Existing Online Communities: Success Stories.” 

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. This year, BioNews is honored to be a part of this important conversation, sharing our insights and success stories in patient recruitment for rare disease clinical trials.

Debidda and Ash’s presentation will focus on the innovative strategies BioNews has developed to leverage existing online communities for patient engagement and recruitment while incorporating key insights from BioNews’ 2024 national patient survey. They will share successful case studies highlighting the impact of sustained community activation, building trust and actively listening to patients and caregivers for rare disease therapies. This session is part of the Advanced Therapies Clinical Development track, where attendees can learn from experts in the field and gain valuable insights into best practices for patient recruitment.

Rare diseases present unique challenges in patient recruitment for clinical trials, and BioNews is at the forefront of finding solutions. Our approach emphasizes the importance of authentic and patient-centric community engagement and the power of online communities in driving advancements in rare disease therapies. By connecting patients, caregivers, and healthcare professionals, BioNews is helping clinical trial sponsors accelerate the development of new treatments and improve outcomes for those living with rare diseases.

We invite attendees of the World Orphan Drug Congress 2024 to join Ash and Debidda’s session to learn more about BioNews’ innovative strategies and success stories in patient recruitment. Stay tuned for updates on the date and time of the presentation.

Follow @BioNews on LinkedIn for the latest updates on our participation in the World Orphan Drug Congress 2024, and join the conversation using #BioNews #WODC2024. We look forward to seeing you there!

For more information about sponsoring clinical trials with BioNews’ clinical trial recruitment solutions, email [email protected] or visit BioNews’ clinical solutions page

About the author:


President BioNews Clinical

Marcella is the president of BioNews Clinical where she is involved in every facet of the work process that connects patients in our rare disease communities with ongoing clinical trials. As a creative builder and change agent, her mission is to promote a human-centered healthcare system built on empathy and radical collaboration: where patients are integral contributors to the collective efforts aimed at advancing the understanding and cure of rare and chronic diseases. Over the past 14 years, across multiple organizations, including Harvard Clinical Research Institute, Science 37, and monARC Bionetworks, she led a multitude of patient-centric projects spanning from patient-powered trial design, patient recruitment and engagement for traditional and virtual/remote clinical trials, patient community development, growth, and engagement through co-creation with peers. She serves as an adviser to pharmaceutical companies, nonprofit organizations, healthcare innovation accelerators and startups for topics related to effective patient engagement in clinical trials and co-creation with patients.

About BioNews

BioNews is a health media company focused on rare diseases and rare patient experiences. We provide an insider’s view of disease and treatment news, condition management information, and community across more than 60 diseases. As a fierce champion of the rare voice, BioNews content is designed to reach, engage, and elevate even the smallest patient populations. We are the only rare news and information property in the U.S. People turn to us for timely treatment news, management tips, community support, and to identify clinical trial opportunities that are a right match for them.