Global Hydranencephaly Foundation Overview
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 closet, patient advocacy for families navigating the medical system, support, information, and a long list of resources making it possible for families to provide their child with the best quality of life possible!