A recent study/survey of patients and families with inherited bone - TopicsExpress

A recent study/survey of patients and families with inherited bone marrow failure syndromes (IBMFS), including Dyskeratosis Congenita & Telomere Biology Disorders, showed participants correctly answered 57% of items assessing general genetic knowledge and 49–59% of disorder-specific knowledge items. Greater knowledge was associated with greater education and ever experiencing genetic counseling, attending a scientific meeting, and seeking information from the Internet and scientific literature. DC Outreach is a patient focused disease advocacy group and we strive to provide the most up-to-date information on Dyskeratosis Congenita. You can find more information on our webpage at https://dcoutreach.org . #GeneticInformation #Knowledge #InheritedBoneMarrowFailureSyndrome #DyskeratosisCongenita #TelomereBiologyDisorders #PatientFocused #DiseaseAdvocacy

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