Global Hydranencephaly Foundation

Global Hydranencephaly Foundation's mission and vision statements serve as the inspirational language guiding the efforts of the organization. Together these statements work to establish organizational behavior plans, guide the decision-making process, and determine the standards for those who represent our name and work effortlessly to build our r... eputation. MISSION: 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!" In effort to carry out this mission, GHF will: Provide life-long, individualized support to all family members, as well as care providers, and strive to meet the needs of those individuals as best capable. Ensure that children are receiving quality, compassionate medical care without discrimination ...Read More