April 9, 2019
I feel better knowing a little more about...
* Patient Natural History Study (formerly CGIP survey) • Most respondents from US, but also some from Canada and other countries • Established 2014 • Numbers copied from slides (13th International VHL Medical Symposium, Houston, TX on October 4-6, 2018)
Also, last April, I also wrote : "There are 12 Canadian de novo’s just in our online VHL Peer community [about 30] on Facebook. Overall, our confirmed contacts list of VHL Peers in Canada = 141..."