This week, the latest on Tess's genetics. What we've learned so far, who we've met, and where we go from here.
Please share the heck out of our page about Tess: http://bit.ly/tessmystery
My wife and I were inspired by Seth Mnookin's New Yorker article "One of a Kind" - click here to read now.
Matt Might wrote this handy-dandy guide, in order to help families find others with rare diseases: "Discovering New Diseases with the Internet: How to Find a Matching Patient" - click here to read now
Unique - The Rare Chromosome Disorder Support Group - website
Genome Connect - a unique patient registry that allows you to share your genetic and health information with researchers, clinicians, and others - website
Global Genes - one of the leading rare disease patient advocacy organizations in the world - website
Matt Might's June 2015 talk at Harvard Med School: "Patient-Driven Precision Medicine" - click here to watch now.
Global Genes RARE Patient Advocacy Summit, September 24th and 25th, Hyatt Regency Resort and Spa, Huntington Beach, CA - a conference whose goal is for patients, caregivers, and advocates to walk away equipped with actionable next steps whether you have been recently diagnosed, are building a disease community, thinking about funding early research, actively engaged in developing a treatment, or have been advocating in rare disease for decades. Click here to learn more.