We are very happy to announce that we have been awarded a RARE Impact Innovation Grant from Global Genes to conduct focus group sessions at our 2017 Family and Scientific Conference in a pilot study that will form the foundation for research studies addressing the unmet medical, health, and nutritional needs of children with ZSD. Using a qualitative approach, the study will focus on identifying unmet needs in the health management of ZSD, as well as the different factors that may influence a caregiver’s overall sense of self-efficacy in managing their child’s healthcare needs.
Read more at: https://globalgenes.org/grantrecipients/