Global Hydranencephaly Foundation

Patient Leader

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!” The Family-to-Family Support Group is the "shoulder to lean on" for our foundation. With individuals available 24-hours a day around the globe; no matter the time of day or the level of need, there is always someone available. The families in this group are more than long-distance web pals, they've become family.


Patient Leader Hero Best in Show: Community Best in Show: Facebook Advocating for Another

Past Awards Participation

Fourth Annual Health Activist Awards


Best in Show: Facebook Best Team Performance


Best in Show: Community or Forum

Third Annual Health Activist Awards


Best in Show: Community or Forum Best in Show: Facebook Health Activist Hero

Fifth Annual Health Activist Awards


Best Team Performance Best in Show: Community or Forum

Sixth Annual WEGO Health Awards


Best in Show: Community Best in Show: Facebook
Global Hydranencephaly Foundation

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