#4HLFamilies Call on July 18, 2021
In this #4HLFamilies call, 3 parents of children affected by 4H (POLR3-Related) Leukodystrophy share their children’s and families’ stories. They discuss the stories of their diagnoses, challenges and successes, and key choices they’ve made in their children’s medical care. Their stories highlight the broad spectrum in cases of 4H and the resilience of our patient and families community.
Following the #4HLFamilies stories, parents discuss questions they have about particular care choices they’ve made or are considering.
At the beginning of the call, Ron from the Yaya Foundation shares a Foundation update about the recently launched 4H Data Collection Program, an exciting upcoming grant announcement, and preliminary plans for a 4H Family and Scientific Conference in 2022.