Personal Genetics Education Project

Rare disease, a family’s story and the power of social media

Seth Mnookin published a great story in the New Yorker about the Might family and their quest to understand their son’s unusual medical condition. In addition to highlighting the role genome sequencing can play in finding a diagnosis and informing medical treatment – still a frustratingly rare occurrence for families who are seeking answers – Mnookin also tackles a number of thorny issues, such as how publication practices can impact patient access to information.  He also highlights the ways in which the Might family and others have used social media to connect with and empower families in similar situations.

One of a kind: What do you do if your children has a condition that is new to science?

Upcoming Events

Wed 29

YES workshops

November 29, 3:30 pm - 5:30 pm
Boston MA
United States
Jan 18

CRISPR Workshop III: Public outreach, education, and engagement

January 18, 2018 - January 19, 2018
Berkeley CA
United States

In the News

Fabienne, Florcy and Lauren have talked to and shared resources with hundreds of teachers at the National Association of Biology Teachers in St. Louis. If you're here come say hi and grab some lessons! ... See MoreSee Less

Posted by pgEd 2 weeks ago

Fabienne, Florcy and Lauren have talked to and shared resources with hundreds of teachers at the National Association of Biology Teachers in St. Louis. If youre here come say hi and grab some lessons!

 

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You ladies are doing a great job!!! Love your resources!!!

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