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Bionews Rare Disease Patient Journey: Insights from Largest US Survey Exposes Gaps and Opportunities for Improved Care

Bionews Launches Much-Needed Resources for Patients with Rare Disease to Close Resource Gap in this Patient Population PENSACOLA, Fla., May 30, 2024 - - Bionews, Inc., a leading voice in the rare disease community, unveils valuable findings from the largest-ever US survey of over 5,000 rare disease patients and caregivers. The “2024 Bionews Patient Survey: Living with Rare Disease” sheds light on the patient journey, revealing critical gaps and opportunities for enhanced care and engagement. Download the report highlights to learn more. Key Findings: Diagnosis delays: A staggering 4.7 years is the average wait for diagnosis, with females disproportionately affected by delays. Lack of awareness is the biggest hurdle, impacting 80 percent of patients. Access challenges: Access to...

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Bionews Evolves Brand Identity with Bold New Look, Same Powerful Voice for Rare Disease Communities

Bionews, the nation’s largest and most trusted network of rare disease communities, today unveiled a new brand identity reflecting its ongoing commitment to supporting patients and fostering meaningful connections. Our brand refresh goes beyond aesthetics; it embodies our ongoing commitment to innovation and patient-centricity. At Bionews, we understand true progress stems from meaningful engagement and authentic connections. Therefore, we have enhanced our digital solutions to offer immersive video experiences and live event capabilities, facilitating genuine interactions between patients and healthcare industry partners. Over the past 24 months, Bionews has strategically expanded its offerings to encompass a comprehensive portfolio of industry-leading digital engagement solutions....

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Mayo Clinic PaSAGE Study Team and BioNews Collaborates to Advance Rare Disease Awareness

The Mayo Clinic PaSAGE Study Team has announced a collaboration with BioNews to inform the future of rare disease care. This collaboration aims to understand the potential impacts of genetic therapies on patient communities and advocate for the creation and translation of patient-centered therapies. PaSAGE is funded by the National Institutes of Health to help integrate patient voices into the therapeutic research process. This collaboration will provide feedback to scientists and therapy developers about the priorities and needs of patients and families. The Mayo Clinic PaSAGE Study Team and BioNews invite stakeholders from across the rare disease community to join them in their mission to drive positive change and improve patient outcomes in the future. For media inquiries: BioNews...

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Unlocking Clinical Trial Recruitment Success: Bionews Presents at World Orphan Drug Congress 2024

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...

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