Global Hydranencephaly Foundation Family-to-Family Resource Network

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.


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GHF is a 100% volunteer-driven nonprofit organization with a common belief that the efforts made in fundraising should be used to support the mission of providing support to families across the globe. From the board of directors to the individuals who give of their time and/or talent for short-term projects; all has been given from the heart.  — Alicia

This family support group is the foundation for this organization's mission. Exclusive to primary care providers of children who been diagnosed with hydranencephaly, the group is far more than simply a support group - it has grown above and beyond, into a family that loves one another through the good and bad that comes along the way.  — Alicia

Global Hydranencephaly Foundation Family-to-Family Resource Network

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