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

Sun 20

New England Library Association Annual Conference in Mystic, CT

October 20 - October 22
Groton CT
United States
Tue 22

pgEd crossing the Atlantic Ocean – EMBL, Germany

October 22 - October 25
Heidelberg
Germany
Nov 01

High Risk Youth Network meeting in Roxbury, MA

November 1
Roxbury MA
United States

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