HYDROCEPHALUS ASSOCIATION

Advocacy the hydrocephalus association advocacy committee has continued to monitor and support key legislation that will benefit the hydrocephalus community. Hydrocephalus was once again included on the list of eligible conditions to receive funding under the congressionally directed medical research programs (cdmrp) and administered by the department of defense (dod). The cdmrp has appropriations of $15.61 billion, which are used to fund the best scientific and medical research. We are proud of this continued accomplishment. Ha continues to co-lead with the spina bifida association a coalition focused on issues around children with chronic medical conditions transitioning to adult medical care and services. Ha also continues to be active in advocacy meetings and sign-on letters put together as part of the national health council (nhc), american brain coalition (abc), national organization for rare disease (nord), research!america, and the national heath defense consortium (dhrc).

Conferencesthe 18th national conference on hydrocephalus, ha connect, was held in tampa florida july 14-16, 2024. The national conference attracted participants from 46 states. 552 individuals attended the three-day event. The conference featured educational tracks for parents, teens, adults, and individuals living with normal pressure hydrocephalus. There were over 70 educational sessions held with over 80 speakers. The conference featured an interactive exhibit hall to engage attendees. Additional events were hosted around innovation and research.

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