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Congenica Patient Advocacy and Engagement Advisory Board

Congenica has created a patient advocacy and engagement advocacy board and named Alastair Kent, former executive director of Genetic Alliance UK, as chair. Other members of the new board are:

  • Cor Oosterwijk, executive director of VSOP, the national patient alliance for rare and genetic diseases in the Netherlands;
  • Nicola Bedlington, former secretary general of and current special advisor to the European Patients' Forum; 
  • Lynsey Chediak, the World Economic Forum's project lead on precision medicine and rare diseases;
  • Luke Rosen, cofounder of rare disease advocacy group KIF1A.org; and
  • Malisa Rust, associate director of patient engagement at PTC Therapeutics.
The Scan

Positive Framing of Genetic Studies Can Spark Mistrust Among Underrepresented Groups

Researchers in Human Genetics and Genomics Advances report that how researchers describe genomic studies may alienate potential participants.

Small Study of Gene Editing to Treat Sickle Cell Disease

In a Novartis-sponsored study in the New England Journal of Medicine, researchers found that a CRISPR-Cas9-based treatment targeting promoters of genes encoding fetal hemoglobin could reduce disease symptoms.

Gut Microbiome Changes Appear in Infants Before They Develop Eczema, Study Finds

Researchers report in mSystems that infants experienced an enrichment in Clostridium sensu stricto 1 and Finegoldia and a depletion of Bacteroides before developing eczema.

Acute Myeloid Leukemia Treatment Specificity Enhanced With Stem Cell Editing

A study in Nature suggests epitope editing in donor stem cells prior to bone marrow transplants can stave off toxicity when targeting acute myeloid leukemia with immunotherapy.