October 1st 2019 was the first annual Rare Cancer Day event promoted by the National Organization of Rare Disorders (NORD). With their permission and enthusiastic support, I was permitted to rebroadcast their webinar and share stories of patients living with a variety of rare cancers. I hosted an awareness stream on my Twitch channel which … Continue reading #RareCancerDay 2019 Roundup
2019
Rare Disease Day 2019
Today is Rare Disease Day! The theme for this year is #ShowYourStripes, which I love because of its reference to the term “zebra”, which many of us with rare disorders call ourselves. This comes from the old phrase physicians turn to when dealing with patients; “when you hear hoofprints, think ‘horse’, not ‘zebra’.” This mindset (while reasonable) … Continue reading Rare Disease Day 2019