Thank you to advocate Ms. von Salis reached outside our community to make connections with Rare Disease Report. In so doing, she also had a great opportunity and made an awareness video (please share it widely).
Here is what Ms. von Salis has to say (in her own words):
“I recently was given the opportunity to do a short ME awareness video by Jim Radke of Rare Disease Report while at an event sponsored by Rare Disease Legislative Advocates. Why bother? Up until recently, NIH listed ME/CFS as a rare disease. One of the CDC’s own prevalence studies puts us close to the 200,000 rate (within the US population) required by law as the maximum to qualify as a rare disease. And last but definitely not least, I believe we need to make potential allies aware of our disease. Rare Disease Report reaches an audience outside of our usual choir, including people interested in not only rare diseases but neglected ones as well. I doubt anyone will argue we are not neglected!
Please check out the video and share it on your blogs, websites, Facebook, and through your networks and email contacts. If you start playing it, you’ll see you can share it via YouTube as well.
Charlotte von Salis
P.S. Please don’t forget to read and share the excellent and informative blurb below the video!”