#RareCancerDay 2019 Roundup

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 lasted about four hours, and throughout the stream I read aloud patient stories from real people who have been impacted by rare forms of cancer.

There are many different kinds of rare cancers, but I covered a handful which I discovered via the #RareCancerDay hashtag on Twitter. All in all, I learned about Fibrolamellar Hepatocellular Carcinoma (FHC), Hamartoma Tumour Syndrome (PHTS/PTEN), Chronic Myeloid Leukemia (CML), Myelodysplastic Syndromes (MDS), and Soft Tissue Sarcomas.

You can watch the entire hours-long archive here, or check out these shorter highlight videos below to learn a little bit about each one. Just a reminder- I am merely a patient advocate, not a medical professional. The information I shared and its accuracy are reliant on the sources I explored. They all appear to be legitimate, trustworthy sources, but I always encourage everyone to use discretion and never take medical advice from anyone but your doctor. 

NOTE: Some of these videos might not be playable yet. At the time of this article’s publication, a few are still processing. Come back and try them again later! 🙂


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