Hydrocephalus Association Brings the Patient Voice to the Hydrocephalus World Congress
The Hydrocephalus Association (HA) proudly represented the patient community at the 2026 Hydrocephalus World Congress in São Paulo, Brazil. Held July 31-August 3, this international meeting brought together researchers, clinicians, engineers, and industry reps from around the world to share new research and advances in hydrocephalus treatment and care.
Samantha Lanjewar, PhD, HA’s Research Programs Manager, represented the organization at the meeting and presented research from HAPPIER, HA’s patient registry. Her presentation showed how patient-reported data can help researchers better understand what it is like to live with hydrocephalus, including symptoms, treatments, healthcare access, and barriers to care. Researchers from around the world expressed excitement about HAPPIER and the opportunity to learn directly from patients. Their interest reinforced the importance of collecting patient perspectives and using that information to identify gaps in what researchers know about living with hydrocephalus. HA looks forward to continuing to grow and improve HAPPIER so it can provide even greater insight into the patient experience.
Dr. Lanjewar also joined the panel “The Heart of the Matter: Integrating Patient Advocacy into Neurosurgical Excellence.” The discussion brought together representatives from the Hydrocephalus Society, European Association of Neurosurgical Societies, Japanese Movement Disorders Society, and HA to explore how patient advocacy can strengthen neurosurgical care and research. The panel gave HA an important opportunity to highlight its commitment to putting the patient voice at the center of research and care. HA continues to work alongside researchers, clinicians, and the community to ensure that patients help shape the questions researchers ask and the outcomes that matter.
Throughout the meeting, researchers and industry partners also shared their enthusiasm for HA CONNECT, HA’s annual community conference. Many described it as one of their favorite conferences because it gives them a chance to connect directly with patients and families, explain their research or the devices they develop, and hear firsthand about the experiences of the people their work aims to help. These connections demonstrate the strength of the community HA has built. They also show why bringing patients, researchers, clinicians, and industry together matters.
The World Congress offered that same spirit of connection on a global scale. Researchers presented work across basic science and clinical research, including studies focused on rehabilitation and social impact, adult and pediatric hydrocephalus, neuroimaging, intracranial pressure, new technologies, and treatment approaches. Seeing such a wide range of research happening around the world offered an inspiring look at the future of hydrocephalus. When researchers share their work, exchange ideas, and build new collaborations across countries and disciplines, they create new opportunities to move the field forward.
HA will continue to bring the patient perspective to these conversations and ensure that the people living with hydrocephalus remain at the heart of the research and innovation working to improve their lives.