Hydrocephalus Association Plays Key Role in Rare Disease Advocacy Week
Washington, DC – February 27, 2024 – The Hydrocephalus Association (HA) is proud to announce its prominent role in Rare Disease Advocacy Week, taking place from February 25 – 28, 2024 in Washington, DC. Hosted by the Everylife Foundation for Rare Diseases, this annual event brings together advocates from across the country to advocate for the rare disease community.
Rare Disease Advocacy Week serves as a pivotal platform for hundreds of individuals and families within the rare disease community to share their stories directly with Congress. HA will be at the forefront throughout the event, actively engaging with advocates to drive policy change and raise awareness for hydrocephalus and related rare conditions.
As a part of this week, Rare Disease Day at NIH (National Institutes of Health) takes place worldwide on Thursday, February 29, 2024. This global observance aims to raise awareness about rare diseases, the people they affect, and NIH collaborations that address scientific challenges and advance research for new treatments.
“The Hydrocephalus Association is excited to bring our advocates together at Rare Disease Advocacy Week,” said Amanda Garzon, HA Chief Operations Officer. “Our participation underscores our commitment to raising awareness and advocating for individuals affected by hydrocephalus and related rare conditions.”
While hydrocephalus itself is not considered a rare disease, given the over 1 million individuals affected by the condition, certain medical classifications (etiologies) of hydrocephalus are indeed rare. Examples include hydrocephalus caused by a brain bleed (post-hemorrhagic hydrocephalus) or X-Link Hydrocephalus.
For more information about the Hydrocephalus Association’s participation in Rare Disease Advocacy Week, please contact Davis Kaderli at 240-483-4884 or advocacy@hydroassoc.org.
About the Hydrocephalus Association:
Founded in 1983 by parents of children with hydrocephalus, the Hydrocephalus Association has grown to become the nation’s largest and most widely respected organization dedicated to hydrocephalus. The Hydrocephalus Association began funding research in 2009. Since then, HA has committed over $13 million to research, making it the largest nonprofit, non-governmental funder of hydrocephalus research in the U.S. For more information, visit www.hydroassoc.org.