About the Hydrocephalus Association

Click here to read our Annual Report

The Hydrocephalus Association provides support, education and advocacy for people whose lives have been touched by hydrocephalus and the professionals who work with them. We strive to ensure that families are empowered with educational materials, informed about the latest research, and have access to quality health care. We advocate for increased research and funding to advance understanding, improve diagnosis and treatment, and find a cure.

The photos on our site provide a window into our community: the millions of people of all ages all over the world living with hydrocephalus, their families and friends, and the medical, scientific, care-giving and teaching professionals who work with them.

It may surprise you to learn that more than one million people in the U.S. have hydrocephalus. Although the condition is not well known, it is not uncommon. If you have hydrocephalus, you are not alone.

The Hydrocephalus Association is a proud member of the National Health Council (NHC), which promotes standards of excellence and cooperation among its members. As a member of the NHC, we join our voice with 50 of the most influential patient-advocacy groups in the nation, together representing nearly 100 million people with chronic conditions or disabilities.

Founded in 1983 and incorporated as a nonprofit in 1986, the Hydrocephalus Association is the nation’s largest and most widely respected advocacy group dedicated to hydrocephalus. More than 60% of our funding comes from individual donations, memberships and events. Approximately 35% comes from foundation and corporate grants. We are governed by a Board of Directors and employ a staff of ten. Our Medical Advisory Board includes 22 prominent professionals, who are respected leaders in hydrocephalus research and treatment.

The Hydrocephalus Association strives to run a financially healthy and responsive nonprofit organization by wisely administering the funds with which we are entrusted. You are welcome to review our latest annual report and our latest 990 filing.

Our Philosophy: Creating Community

The Hydrocephalus Association has been instrumental in creating a community of individuals, families and professionals focused on providing integrated, quality support for people with hydrocephalus. We believe that support, education and advocacy are joint responsibilities — shared by individuals, families and professionals. While families rely on us for knowledge and empowerment, professionals depend on us to keep them abreast of patient concerns and to supply them with resource materials. Together we drive research forward — unifying and amplifying our message to create the greatest impact.

To meet the needs of the hydrocephalus community, we continually update our resources to keep pace with new research, medical technologies and protocols, and educational resources. We connect people to share their knowledge, strategies and messages of hope.

Our community is vital to the continued strength of the Hydrocephalus Association. It is only with the chorus of voices across the nation that we will achieve the research dollars that is desperately needed for better treatments and a cure.

Hydrocephalus is a chronic condition and treatment is far from ideal. But with early detection and appropriate intervention, the future for many is promising. As we work together, the future will be even brighter. We look forward to hearing from you.

Our Services: Reaching out to Families and Professionals

  • Our outreach program provides families and individuals with one-on-one personal support. Our staff handles questions via phone and e-mail. Through GalbrielsLife.org we provide the tools to connect you with others in similar situations. Social gatherings enable families to share information and experiences in person. Please see Events.
  • Our Publications provide educational information for specific situations and stages of life with hydrocephalus. Please see Publications and Products.
  • To reward accomplishments and perseverance, eight annual scholarships are awarded to individuals pursuing education beyond high school. Please see Scholarships.
  • To encourage young researchers to focus on hydrocephalus, we award an annual prize to a resident in neurosurgery who has made an outstanding contribution to hydrocephalus research. Please see Resident’s Prize.
  • Our advocacy program directs and inspires grassroots lobbying efforts to increase federal funding of research to increase understanding, improve diagnosis and treatment and find a cure.
  • The biennial national conference on hydrocephalus for families and professionals enables us to make personal connections and keep up to date with innovations. For information on the conference, please see Events.

For more information about any of these services, please contact us.

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