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?

In the News

Our newest Map-Ed quiz, on Genome Editing & CRISPR, is now live! Answer five questions and pin yourself on the world map.
map-ed.org/maped/?q=13

And if you haven't yet, also check out our other quizzes on the microbiome, sickle cell trait, non-invasive prenatal testing, and more.
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Posted by pgEd 1 month ago

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