DEBRA International President Featured in RARE Revolution Magazine

DEBRA International is proud to announce that President Dr Ritu Jain has been featured in two articles in the Rare & Undiagnosed edition of RARE Revolution Magazine (Winter 2025/26 issue). Her contributions highlight both collaborative insights with other rare disease experts and her solo perspectives on inclusive and equitable diagnostic care globally.

Aspiring to better diagnosis outcomes for all

On pages 34–35, Dr Jain contributed alongside Sheela Upadhyaya and Dr Zarazuela Zolkipli-Cunningham in a joint article to highlight the critical findings of the Aspire4Rare diagnosis report. The article examines the global challenges that families face in obtaining a timely and accurate diagnosis for rare conditions and emphasizes the need for structured, equitable approaches to health system improvement.

The Aspire4Rare report, developed through a global collaboration of patient advocates, clinicians, and policymakers, provides a framework for improving rare disease diagnosis worldwide. It identifies key barriers: financial, cultural, and systemic that contribute to prolonged “diagnostic odysseys,” particularly in regions with limited resources. The article illustrates how the framework can guide governments, healthcare systems, and patient organisations to implement measurable, context-specific strategies that reduce delays, improve care access, and support families throughout the diagnostic process.

By centering patient experience and evidence-based policy, the contributors underscore the need for collaboration across sectors. Sheela Upadhyaya shares the lived experience perspective, highlighting how delays in diagnosis affect daily life and access to care, while Dr Zolkipli-Cunningham contributes clinical and health system insights. Dr Jain ties these perspectives together, emphasizing that the Aspire4Rare framework is not just a report, it is a call to action for global health systems to adopt more inclusive, accountable, and patient-centered practices.

The Aspire4Rare framework shows us that improving diagnosis is not only about clinical tools — it’s about designing health systems that truly serve patients and families.

The article demonstrates the critical need for collaboration among patient advocates, clinicians, and policymakers to address these complex challenges and improve diagnosis outcomes globally.

Understanding the value of diagnosis in Asia Pacific

Pages 40–42 feature Dr Jain’s solo article, offering a detailed perspective on inclusive and context-driven approaches to rare disease diagnosis. She calls attention to the financial, cultural, and systemic barriers that often prolong the diagnostic journey for many families worldwide.

In this article, Dr Jain stresses that truly effective diagnostic systems must be tailored to the unique needs of each community rather than relying on one-size-fits-all solutions. She shares the very real financial, cultural and systemic barriers facing families across the Asia Pacific. Drawing attention to inequities in research, policy and data, Ritu calls for a more inclusive, context-driven approach, urging international stakeholders to listen, understand, invest and act to make diagnosis and care not just accessible but relevant.

Through these features, Dr Jain continues to advance DEBRA International’s mission to ensure equitable access to care, diagnosis, and support for individuals living with Epidermolysis Bullosa (EB).

Read the Full Edition

The Rare & Undiagnosed edition of RARE Revolution Magazine is available online:

Read the magazine here.