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Phone: 573-280-2412
9333 McAuliffe Lane NW
Washington 98383

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Target demographics: families of children with a diagnosis of hydranencephaly, or those undiagnosed but possessing of similar traits/characteristics, across the globe

Direct beneficiaries per year: network over 300 families across the globe and provided several new families with some light during the darkness of diagnosis.

Someone who had 3 hours of volunteer time could: Help create/design informational flyers; contact families via telephone to address concerns/gather information if in need of patient advocacy; network families to local resource connections

Geographic areas served: globally

Programs: Family-to-Family Resource Network; equipment lending closet, patient advocacy for families navigating the medical system, support, information, and a long list of individualized resources making it possible for families to provide their child with the best quality of life possible!

The Global Hydranencephaly Foundation is a family driven nonprofit organization dedicated to providing families faced with a diagnosis of hydranencephaly, the opportunity to help their child live the quality of life he or she deserves. The family-to-family resource network is the foundation of this mission; an ideally structured, multi-faceted community for the dissemination of invaluable information, sharing of effective care management strategies specific to the unique circumstances a family faced with diagnosis of this rare neurological condition may encounter, and individualized, life-long support. Emphasis is placed on the development of empowered parent advocates, strengthened by availability of comprehensive information, geographically tailored resources, and a confident awareness of the rights children have to quality, compassionate care without discrimination. We embrace the opportunity for continuous growth through the expansion of additional collaborative partnerships with like-minded organizations and reputable community businesses. Through community-based awareness campaigns and the planned infiltration of the medical community, we aim to conquer the misconceptions that exist surrounding this diagnosis and portray a clearer picture of the possibilities that exist for these children; giving multiple reasons to “Believe in the Impossible!”
GHF is a registered 501(c)(3) nonprofit organization incorporated in the Commonwealth of Virginia on June 14, 2011. We began doing business as Global Hydranencephaly Foundation in December 2011 under the parent corporation of Brayden Alexander Global Foundation for Hydranencephaly; registered as a foreign entity to do business in Washington state in October 2012; sponsored the first EVER global hydranencephaly conference in Dallas, TX the weekend of June 14-16; working to build our network of families and have reached families in the US, Mexico, Canada, Brazil, Africa, Greece, Philippines, Belize, Australia, Ireland, United Kingdom, Portugal, and more. Recognizing our SECOND Hydranencephaly Awareness Month this June 2014 with several events, including our first Global-Wide Walk/Run for hydranencephaly awareness.

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I found this site shortly after having a second child diagnosed with hydranencephaly. Unfortunately our sweet daughter Bristol earned her wings when she was twelve days old. Her sister, Bailey, was fourteen and also had hydran. I had never met anyone that had a child similar to my daughter. I ... more »
My Grandson was given the diagnosis of hydranencephaly when my daughter was 32 weeks pregnant. She was told to terminate the pregnancy as the baby would not survive the birth and if by any chance he did, his life would be very short. The doctors stated that my Grandson would be unable to recognise ... more »
My niece, Burkleigh, was diagnosed with Hydranencephaly while she was still in her mommy's stomach. I sought out any and all information I could get. My mother actually stumbled upon the Global Hydranencephaly Foundation web page and invited me to join the Facebook page. It's truly an amzing thing ... more »
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