A Brain Condition as Common as Parkinson’s Disease Remains Largely Unknown: More People Live with Hydrocephalus Than You Think
The Hydrocephalus Association to Convene Medical and Scientific Leaders to Address the Population Burden, Economic Impact, and Barriers to Care
INDIANAPOLIS, Ind. (July 2026) – Parkinson’s disease is a household name. Hydrocephalus is not. Hydrocephalus is a chronic neurological condition caused by an abnormal buildup of cerebrospinal fluid in the brain. It affects an estimated one million Americans and impacts individuals across the lifespan, from premature infants to older adults. Despite being as common as Parkinson’s disease, hydrocephalus remains an under-recognized and underfunded neurological condition.
To change that, the Hydrocephalus Association (HA), in partnership with the Rudi Schulte Research Institute (RSRI), will host its Annual Research Workshop, “Why Hydrocephalus Matters: Population Burden, Economic Impact, and Barriers to Care,” on July 21–22, 2026, in Indianapolis, IN. The workshop will bring together physicians, scientists, neurologists, neurosurgeons, healthcare leaders, industry companies, investors, and individuals living with hydrocephalus to strategize in increasing awareness, and to advance clinical care and research.
The event is free to attend virtually and open to anyone interested in learning about hydrocephalus and its future.
Register for the virtual workshop: https://forms.gle/Ty6qCGJtN4YCqsxD7
“This workshop is about bringing light to an invisible condition,” said Monica Chau, PhD, the Chief Scientific Officer at the Hydrocephalus Association. “Hydrocephalus impacts so many families, yet many people, including healthcare professionals are unfamiliar with it. We hope to reveal the true burden of the condition and inspire greater investment, innovation, and collaboration.”
Hydrocephalus is often treated with brain surgery, including the implantation of shunts to drain excess fluid, but patients frequently face lifelong challenges, including repeat surgeries, difficulties accessing specialized care, and significant physical, emotional, and financial burdens. Many adults with hydrocephalus report years-long delays in diagnosis, while families navigate fragmented healthcare systems and limited treatment options.
Throughout the two-day workshop, attendees will explore:
- The prevalence of hydrocephalus across children and adults, especially older adults.
- The hidden economic and healthcare costs associated with the condition.
- Barriers to diagnosis and access to specialized care.
- Opportunities for innovation in diagnostics, devices, and therapeutics.
- The lived experiences of patients and caregivers.
- Strategies to expand research funding, industry engagement, and clinical care models.
The workshop’s distinguished speakers include experts from Johns Hopkins University, Yale University, the University of Calgary, Nationwide Children’s Hospital, the National Institute of Neurological Disorders and Stroke (NINDS) of the National Institutes of Health (NIH), the Patient-Centered Outcomes Research Institute (PCORI), and leaders from the medical technology and investment communities. Patients and caregivers will also share their stories.
A key theme of the meeting is that hydrocephalus represents not only an urgent medical need, but also an untapped opportunity for innovation. Experts will discuss why hydrocephalus should be a priority area for pharmaceutical companies, medical device developers, investors, and policymakers seeking to improve neurological health outcomes.
“Hydrocephalus has been undercounted, understudied, and underrecognized for decades,” said Diana Gray, President and CEO of the Hydrocephalus Association. “By bringing together experts across medicine, science, industry, and patient advocacy, we have an opportunity to build a future where every person with hydrocephalus has access to timely diagnosis, effective treatments, and specialized care.”
The workshop precedes the Hydrocephalus Association’s annual conference, HA CONNECT which is being held in collaboration with Indiana University and where patients, families, and professionals from around the world will gather to learn, connect, and advance the future of hydrocephalus care and research.
To learn more about HA CONNECT and Indiana University’s partnership, visit: https://www.hydrocephalusconference.org
As awareness grows, organizers hope one day hydrocephalus will no longer be met with a puzzled look, but with the same recognition and urgency afforded to other neurological conditions such as Parkinson’s Disease.
About the Hydrocephalus Association
The Hydrocephalus Association is the nation’s leading nonprofit organization dedicated to finding a cure for hydrocephalus and improving the lives of those affected by the condition through research, education, and support. Since its founding in 1983, the organization has invested millions of dollars in research and built a global community of patients, families, clinicians, and scientists committed to advancing the field.