Vanessa

PATIENT CASE

Desmoid Tumor​

Summer & Fall 2021. 
Vanessa is a desmoid tumor patient who’s case remains unresolved. Since she was diagnosed in 2011, Vanessa has been on 9 drugs and/or treatments. Her case is unique because she still lacks a molecular diagnosis for desmoid tumor and has run out of known clinical options. As a public facing patient, Vanessa is making her personal health data open to the scientific community to help create new insights for her case. She documents her medical and spiritual journey on her blog, tiny healer. 

We invite all scientists, researchers and medical professionals with intermediate to advanced experience to participate in Vanessa's case. Research to the People's cases are Open Participation, Open Data and Open Results. Submitted analysis will remain accessible via GitHub and through this site.

The first part of Vanessa's case is being hosting in partnership with Hack4Rare, an annual Hackathon produced by Children's Tumor Foundation and MIT Hacking Medicine. At this event we are running a collaborative track focused on analyzing Vanessa's existing clinical data.

Vanessa


The second half of Vanessa's case will commence in Mid-August. We expect to host a small group of researchers in person at Stanford Medical School, in addition to virtual participation.

Vanessa writes a blog about her experience, Tiny Healer.

She was recently featured on Techtopia with Chitra Ragavan - Ep. 7 — How a patient with a rare tumor is taking personalized medicine to a new level through a unique non-profit biomedical research initiative.