Thanks to DEBRA Australia’s EB research grant funding, PhD student Dhanya Shanmuganathan was able to present her DDEB research findings to an international audience of clinicians and researchers earlier this year.
She was awarded $3,500 in funding to attend the DEBRA International EB Congress in Brazil in January 2026. The Congress provided a valuable opportunity for meaningful discussion and networking, with Dhanya taking part in the Youth Council Forum and several expert presentations.
Dhanya’s travel report is published in full below.
“As a third-year Doctor of Philosophy (PhD) student at the Monash Biomedicine Discovery Institute, I recently had the opportunity to present my research on the characterisation of pain and itch phenotypes in a mouse model of Dominant Dystrophic Epidermolysis Bullosa (DDEB) at the 2026 International EB Congress in Brazil. I presented my findings through a poster presentation, which allowed me to engage with researchers and clinicians from across the global EB community.
The International EB Congress is a premier forum that brings together clinicians, healthcare professionals, researchers and patients to share knowledge, insights, and innovative approaches to understanding and treating EB. The program consisted of plenary sessions, panel discussions, and focused workshops that provided a comprehensive overview of EB from diverse perspectives, highlighting recent advances in diagnosis, treatment and symptom management.
One of the key sessions focused on genetics and diagnostics, where common diagnostic challenges were discussed, particularly for rarer EB variants. Current diagnostic approaches, including transmission electron microscopy (TEM) and immunoelectron microscopy (IEM), were reviewed, with emphasis placed on the importance of immunofluorescence mapping and electron microscopy for improving diagnostic accuracy. These discussions reinforced the complexity of EB diagnosis and the need for continued refinement of diagnostic tools.
The Youth Council Forum provided valuable insights into living beyond the challenges of EB and highlighted how young individuals with EB are actively shaping the future of the EB community. Additionally, the open forum was particularly impactful, as it created a space for patients and caregivers to openly share their lived experiences. This interactive group discussion explored strategies for navigating daily life with EB, engaging in physical and social activities, and overcoming barriers to maintaining an active lifestyle. Hearing directly from patients about their resilience, creativity, and determination was highly motivating and reinforced the importance of patient-centred research.
The basic science sessions were of particular relevance to my research interests. One session provided an overview of a recessive dystrophic EB (RDEB) mouse model, focusing on the characterisation of scarring and fibrosis in both mouse and human skin. Learning about this more severe EB subtype and its underlying pathology offered valuable comparative insights for my work on DDEB. Another session delivered an in-depth overview of basement membrane biology, helping to elucidate the mechanisms underlying dermal-epidermal junction protein deficiencies.
Several talks highlighted current and emerging therapeutic approaches for EB, including gene therapy, biological and cellular therapies, and treatments targeting inflammation, particularly in DEB. One presentation that closely aligned with my research interests explored the hypothesis that keratinocyte dysfunction contributes to chronic pain in EB by driving neuropathic changes, as identified in RDEB mouse models. Potential mechanisms underlying the aggressive squamous cell carcinoma seen in RDEB were also discussed, alongside the introduction of a specialised artificial intelligence tool designed to detect and classify EBassociated skin lesions. This user-friendly tool allows patients to remotely submit images for clinical assessment, reducing the need for frequent in-person visits.
Other promising therapeutic strategies were also presented, including skin grafts modified using SIN retroviral vectors and gene-editing approaches aimed at correcting pathogenic variants in RDEB. These advances highlighted the rapid progress being made toward diseasemodifying treatments for EB.
During the poster presentation session, my research generated engaging discussions with a diverse audience of researchers and academics. I received valuable feedback and recommendations on experimental techniques that could be explored to further advance my project. Importantly, this platform allowed me to promote the DDEB mouse model on an international scale, increasing its visibility and highlighting its unique characteristics compared to the more widely studied RDEB models. I also had the opportunity to discuss pain research with a fellow researcher working on pain mechanisms in RDEB, which was both insightful and inspiring.
I am deeply grateful to DEBRA Australia for awarding me the travel fellowship that supported my attendance at the International EB Congress. This opportunity allowed me to present my research, learn from leading experts in the field, and engage in meaningful discussions that will directly inform my ongoing PhD work. The conference strengthened my commitment to advancing our understanding of the mechanisms underlying EB, particularly those driving chronic pain and itch, with the ultimate goal of improving quality of life and health outcomes for individuals living with EB.”
Dhanya Shanmuganathan,
Monash Biomedicine Discovery Institute,
Monash University
