The Hydrocephalus Association is the leading voice for the hydrocephalus community on Capitol Hill, successfully fighting for legislation that increases federal research dollars for hydrocephalus and improves the lives of those living with the condition.
Our Advocacy Strategy
We advocate on behalf of the over 1 million Americans living with hydrocephalus to increase funding for research into hydrocephalus causes, treatments, and cures; and to address legislation that impacts the lives of people living with the daily challenges of hydrocephalus.
Advocate with Us
The hydrocephalus community is over 1 million strong. We have the power to create change by raising our voices and sharing our powerful stories. With your help, we can shape policies that will lead to increased funding for hydrocephalus research and greater access to programs and support services for people living with hydrocephalus. The best advocates are the patients, family members, medical caregivers, and others directly affected by the condition – WE NEED YOU!
Our Advocacy Impact
We started our advocacy efforts in the late 1990s, representing the patient community at a handful of federally-hosted events. It was not until 2004 that we began to formalize an advocacy strategy when we put the wheels in motion for the first NIH sponsored workshop on hydrocephalus in September of 2005. See a timeline of the significant milestones in our work to advocate for more awareness and public research funding for hydrocephalus.
Congressional Hydrocephalus Caucus
Each year, the Hydrocephalus Association works with the bipartisan Congressional Pediatric and Adult Hydrocephalus Caucus to shape policies that will help people impacted by hydrocephalus. The Congressional Pediatric and Adult Hydrocephalus Caucus informs the congressional community about the needs of those living with hydrocephalus, their families and caregivers, and works on relevant policy issues.