In 2018, a member of Hope for HIE's community connected our organization to TREND Community, a company that was started by two moms who had originally connected through a Facebook group dedicated to a specific diagnosis each of their children shared. Over the last several years, these two moms saw the qualitative data that was shared about the condition and was leading to better treatment options for their children. Thus, TREND Community was formed. An organization focused on "turning anecdotes into evidence".
Hope for HIE engaged TREND to analyze our information sharing to get a baseline of the unmet needs of our community, with the hope that we can follow other organizations in their research pathways to find new ways to decrease incidence of HIE and work with researchers and clinicians to improve quality of life for patients and families affected by HIE.
TREND presented Hope for HIE with a Community Voice Report in May 2019. This report highlights some of the largest unmet needs in our community. This report has been shared several times over the last several months with leading clinicians in the neonatal and pediatric neurology community.
We are excited to see where this goes and are so grateful for their partnership.
To read the report, CLICK HERE.