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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

Fertility Fraud Found

Consumer genetic testing has uncovered cases of fertility fraud that are leading to lawsuits, according to USA Today.

Ties Between Vigorous Exercise, ALS in Genetically At-Risk People

Regular strenuous exercise could contribute to motor neuron disease development among those already at genetic risk, Sky News reports.

Test Warning

The Guardian writes that the US regulators have warned against using a rapid COVID-19 test that is a key part of mass testing in the UK.

Science Papers Examine Feedback Mechanism Affecting Xist, Continuous Health Monitoring for Precision Medicine

In Science this week: analysis of cis confinement of the X-inactive specific transcript, and more.