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 25

JAX Teaching the Genome Generation course (Connecticut)

June 25, 8:00 am - June 30, 5:00 pm
Hartford CT
United States
Tue 27

Summer Institute: Genetics and Social Justice, Brockton, MA

June 27, 9:00 am - June 29, 3:30 pm
Brockton MA
United States
Jul 09

JAX Teaching the Genome Generation course (Maine)

July 9 - July 14
Bar Harbor ME
United States

In the News

Sign Up For Our Newsletter