Advocacy

2024 was a year full of legislative accomplishments for the Hydrocephalus Association and the broader hydrocephalus community. Our successes could not have been achieved without the hard work of advocates from across the country. Partners in Congress were some of the strongest contributors for our mission as well.

The House Foreign Affairs Subcommittee’s November 20th hearing discussed global brain health challenges, focusing on hydrocephalus in developing countries. Experts, including Dr. Benjamin Warf of NeuroKids, highlighted the need for better care and training to support patients, particularly in low-resource regions. The hearing also addressed the lack of USAID programs for brain health and the importance of international aid for hydrocephalus treatment.

Washington, D.C. is buzzing as Congress pushes key legislation and the Hydrocephalus Association partners with advocates to drive priorities forward. With government funding set to expire on December 20th, a short-term resolution is likely. The new presidential administration and Congress will bring major changes, especially in the first 100 days. Stay tuned!

As Medicare beneficiaries navigate through the open enrollment period, it is crucial for them to understand the surplus of 2025 changes as they choose a new Medicare insurance plan. The Medicare Open Enrollment Period began on October 15 and will close on December 7th. 

As healthcare advocates race to secure passage of critical bills before the end of the 118th Congress, the Hydrocephalus Association (HA) is joining forces on Capitol Hill, advocating for vital legislation to support Medicare coverage for breakthrough devices, strengthen the medical workforce, ensure fair billing practices, fund brain research, and raise hydrocephalus awareness.

Stay informed with the latest updates on hydrocephalus advocacy from Capitol Hill as we highlight key legislative efforts and community engagement for September 2024.

Things in Washington, DC are both quiet and chaotic at the same time. Apparently, it’s a thing with the political world. Here’s the scoop on what’s happening on hydrocephalus issues.

Things in Washington, DC are both quiet and chaotic at the same time. Apparently, it’s a thing with the political world. Here’s the scoop on what’s happening on hydrocephalus issues.

Things in Washington, DC are both quiet and chaotic at the same time. Apparently, it’s a thing with the political world. Here’s the scoop on what’s happening on hydrocephalus issues.

HA staff recently attended the National Health Council’s (NHC) Science of Patient Engagement Symposium. The event, hosted in Washington, D.C., brought together an array of patients and patient organizations to speak on the importance of patient-centered programs and policies within the American healthcare system.

Things in Washington, DC are both quiet and chaotic at the same time. Apparently, it’s a thing with the political world. Here’s the scoop on what’s happening on hydrocephalus issues. (March 2024)

The Hydrocephalus Association recently partnered with the Defense Health Research Consortium (DHRC) to host a research-centered Congressional Briefing on Capitol Hill.

Things in Washington, DC are both quiet and chaotic at the same time. Apparently, it’s a thing with the political world. Here’s the scoop on what’s happening on hydrocephalus issues.

Members from the Hydrocephalus Association Action Network came to Washington, DC, to participate in the Everylife Foundation for Rare Disease’s Rare Disease Week, which took place from February 25-28, 2024.