Alongside the hydrocephalus community, we advocate for policies, programs and agencies that help advance research into a cure for hydrocephalus and new treatment options, improve the lives of the over 1 million Americans living with hydrocephalus, and raise awareness about the condition. Our primary advocacy goal is to ensure that the federal government is investing adequate funds to accomplish the following:
- To understand the breadth and depth of impact of hydrocephalus on our people;
- To make funding hydrocephalus research for improved treatments and cures a priority;
- To support those affected by hydrocephalus with appropriate programs.
These goals require targeted awareness campaigns to ensure that decision makers understand that hydrocephalus is a condition that affects a broad array of people, is not cured with the insertion of a shunt, and is a growing problem with significant burden on our people and the economy. To accomplish this, our advocacy strategy is focused on four key areas:
Advocacy Impact
Our advocacy achievements have come a long way. We started our advocacy efforts in the late 1990s, representing the patient community at a handful of federally-hosted events. In 2006, we hosted our first National Advocacy Day in Washington, DC, which galvanized HA to consider the formalization of an Advocacy program. In 2011, the HA Board formally included Advocacy as one of our four strategic pillars. Since our inception, we have achieved many steps in the federal advocacy space. See a timeline of the significant milestones of our work to advocate towards more awareness and public research funding for hydrocephalus.
Partnerships and Coalitions
The Hydrocephalus Association collaborates with various organizations and coalitions on policy issues that affect the hydrocephalus community. By partnering with other like-minded organizations, we can provide a stronger, unified voice on Capitol Hill.
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