Hydrocephalus Association Elevates the Patient Voice on the Global Stage
The Hydrocephalus Association (HA) was proud to represent the patient community at the Hydrocephalus Society World Congress in Toulouse, France, September 2025. The World Congress is one of the largest international meetings on hydrocephalus bringing together neurosurgeons, neurologists, other healthcare professionals, and scientists dedicated to hydrocephalus care and research. At this international conference with more than 40 countries represented, HA emphasized a critical message: patients’ experiences are important in shaping research, medical care, and awareness.
Diana Gray, HA’s President and CEO and Monica Chau, HA’s National Director of Research at the Hydrocephalus Society World Congress in Toulouse, France.
By collaborating with professional organizations like the Hydrocephalus Society, HA continues to advocate for patient experiences to be incorporated into science and medicine. Monica Chau, PhD, HA’s National Director of Research, presented The Research Priorities to Improve Neuropsychological & Cognitive Outcomes, a published framework to help clinicians and researchers focus on improving thinking, memory, and emotional well-being for people living with hydrocephalus. These priorities were developed in collaboration with leading experts in neuropsychology and cognition. The priorities have been published in the Journal of Neurosurgery as a call to action towards addressing quality-of-life issues for patients.
Diana Gray, MA, HA’s President and CEO, spoke on Advancing Hydrocephalus Care, Research, and Awareness through Strategic Collaboration. She highlighted how partnerships across institutions, countries, and disciplines can move progress. For example, World Hydrocephalus Day allows organizations and patients to stand and show their support. Together, Diana and Monica spoke during a special session titled “Stronger Together: How Patient-Professional Alliances Can Improve Hydrocephalus Care.” They encouraged clinicians to take simple, meaningful steps to connect their patients with each other and with organizations like HA to find support in a community. These actions can be as simple as setting a time and place for their hydrocephalus patients to meet locally.
Why does this matter?
Through these international platforms, the Hydrocephalus Association can advocate for clinicians and scientists to incorporate patient experiences into medical care and scientific research. Diana Gray and Monica Chau gave next steps in for clinicians to start local communities for their patients.