Causes: Brain Disorders, Brain Disorders Research, Health
Mission: The mission of the Hydrocephalus Association is to find a cure for hydrocephalus and improve the lives of those impacted by the condition. We will accomplish this by collaborating with patients, caregivers, researchers and industry, raising awareness, and funding innovative, high-impact research to prevent, treat and ultimately cure hydrocephalus.
Results: HA has made significant progress in research. Its $13 million research investment has resulted in more than $50 million in hydrocephalus research grants by the National Institutes of Health and the Dept. of Defense. HA also funds the works of the Hydrocephalus Clinical Research Network and the Adults Hydrocephalus Clinical Research Network, working to find better treatment options and improved quality of life for those living with hydrocephalus. Additionally, HA has developed the first-ever hydrocephalus patient registry (HAPPIER) - the HA Patient-Powered Interactive Engagement Registry to accelerate hydrocephalus research. The Patient Registry is an online database created for the hydrocephalus community to share their experience living with hydrocephalus, giving researchers access to important data. Data that can lead to discoveries in underlying causes of the condition, intervention strategies for preventing the condition, improvements in diagnosis, and/or alternative treatments. HAPPIER also helps HA develop programs and resources to support patients and families with living daily with hydrocephalus. HA has also developed the HydrocephalusCONNECT Peer Support --Teams of HA Volunteers and staff answer the hydrocephalus community's questions and listen to their concerns either via phone call or email. The Peer Support is a one-stop for support, information and connection.
Target demographics: Anyone living with the challenges of hydrocephalus -- pediatric, adult or Normal Pressure Hydrocephalus (NPH. )
Direct beneficiaries per year: Millions of Americans affected by hydrocephalus, a life threatening, life changing condition.
Geographic areas served: The U. S. and most foreign countries
Programs: HA's program services include:*A resource for newly diagnosed families needing accurate information, education and support. *One-on-one support services for newly diagnosed families or families facing new challenges*HA funds 44 support groups across the U. S. *Public education materials -- HA has written, edited, revised and published more than 30 hydrocephalus related education pieces (brochures, fact sheets, booklets, etc. ) provided free of charge to patients, schools, families, etc. *Annual scholarships for those with hydrocephalus pursuing higher education *A biennial conference for families where they can connect with other families and obtain the most current information on hydrocephalus, hydrocephalus treatments and advice on how to best live with hydrocephalusResearch -- Since HA began funding research in 2009 it has invested over $13 million in the most promising research available, making it the largest non-profit, non-governmental funder of hydrocephalus research in the U. S. More importantly, HA funded scientists have been able to use the initial, modest funding from HA to accumulate the data required to apply for, and receive, larger federally funded grants. HA's $13 million investment has resulted in an additional $50 million in hydrocephalus research.
Mission: The mission of the Hydrocephalus Association is to find a cure for hydrocephalus and improve the lives of those impacted by the condition. We will accomplish this by collaborating with patients, caregivers, researchers and industry, raising awareness, and funding innovative, high-impact research to prevent, treat and ultimately cure hydrocephalus.
Results: HA has made significant progress in research. Its $13 million research investment has resulted in more than $50 million in hydrocephalus research grants by the National Institutes of Health and the Dept. of Defense. HA also funds the works of the Hydrocephalus Clinical Research Network and the Adults Hydrocephalus Clinical Research Network, working to find better treatment options and improved quality of life for those living with hydrocephalus. Additionally, HA has developed the first-ever hydrocephalus patient registry (HAPPIER) - the HA Patient-Powered Interactive Engagement Registry to accelerate hydrocephalus research. The Patient Registry is an online database created for the hydrocephalus community to share their experience living with hydrocephalus, giving researchers access to important data. Data that can lead to discoveries in underlying causes of the condition, intervention strategies for preventing the condition, improvements in diagnosis, and/or alternative treatments. HAPPIER also helps HA develop programs and resources to support patients and families with living daily with hydrocephalus. HA has also developed the HydrocephalusCONNECT Peer Support --Teams of HA Volunteers and staff answer the hydrocephalus community's questions and listen to their concerns either via phone call or email. The Peer Support is a one-stop for support, information and connection.
Target demographics: Anyone living with the challenges of hydrocephalus -- pediatric, adult or Normal Pressure Hydrocephalus (NPH. )
Direct beneficiaries per year: Millions of Americans affected by hydrocephalus, a life threatening, life changing condition.
Geographic areas served: The U. S. and most foreign countries
Programs: HA's program services include:*A resource for newly diagnosed families needing accurate information, education and support. *One-on-one support services for newly diagnosed families or families facing new challenges*HA funds 44 support groups across the U. S. *Public education materials -- HA has written, edited, revised and published more than 30 hydrocephalus related education pieces (brochures, fact sheets, booklets, etc. ) provided free of charge to patients, schools, families, etc. *Annual scholarships for those with hydrocephalus pursuing higher education *A biennial conference for families where they can connect with other families and obtain the most current information on hydrocephalus, hydrocephalus treatments and advice on how to best live with hydrocephalusResearch -- Since HA began funding research in 2009 it has invested over $13 million in the most promising research available, making it the largest non-profit, non-governmental funder of hydrocephalus research in the U. S. More importantly, HA funded scientists have been able to use the initial, modest funding from HA to accumulate the data required to apply for, and receive, larger federally funded grants. HA's $13 million investment has resulted in an additional $50 million in hydrocephalus research.
info@hydroassoc.org
4340 East West Highway Suite 905, Bethesda, MD 20814
888-598-3789
Health
Bethesda
