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

Mon 22

SciEd Conference 2019

April 22 - April 25
Washington, D.C.
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Mon 29

“Is science letting us play God?” – Interfaith fellows meeting

April 29, 10:00 am - 1:00 pm
New York NY
United States
May 14

pgEd at the LEAH Project

May 14, 4:00 pm - 6:00 pm
Boston MA
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In the News

An event that our teacher friends may find useful: NIH Director Dr. Francis Collins will be hosting a Facebook Live event on Monday, Dec 10th from 3:15-45 pm ET, where he will take questions from middle school students from across the US. You are invited to livestream this event to your classroom and submit your students' questions in the event feed's comments section!

National Institutes of Health (NIH)
How can you start a career in STEM? Join NIH Director & geneticist Dr. Francis Collins on December 10, 2018 at 3:15 pm ET for a conversation featuring Johnson Creek Middle School on becoming a scientist. Dr. Collins will be taking questions from middle school students from across the U.S.!
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Posted by pgEd 4 months ago

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