Rare Disease Day 2022

CSRF celebrates Rare Disease Day today with millions of other rare disease patients around the globe.  If you’re on Instagram and would like to share your photo(s), we’ll be glad to upload them throughout the day.  Check us out @CSRFcommunity

This year’s Rare Disease Day theme is Health Equity.  Recently, Drs. Adriana Ioachimescu and Nelson Oyesiku (neuroendocrinologist and neurosurgeon, respectively) published a paper looking at racial disparities in patients treated at Emory University Hospital in Atlanta, GA.  Their work looks specifically at pituitary patients, but the concepts of disparity in medical treatment, bias in medicine (even amongst specialists who treat the very thing they have bias about), and other barriers to swift, appropriate diagnosis and treatment are not new.  A rare disease (or two or three) adds such an intense burden to a patient’s life, the variables quickly become overwhelming and for the majority of rare diseases, there is no support group or easy-to-find information source.  Frequently if you are considered to be in a “minority” category and/or don’t speak English, it is hard to find resources that look and sound like you and reflect availability and conditions where you live.  If this is a passion subject for any of our members and you have some free time, we’d love to talk to you.

CSRF member, patient, and Contributing Editor for In Vivo William Looney agreed to summarize the Emory doctors’ research and connect it to this year’s RDD theme.  Thanks, Bill!

Read Rainbow Shines on Rare here.

We are grateful for the opportunity to be a resource to you in your journey.  It is more important than ever to connect patients to relevant, scientifically-sound data, but also for us as patients to create the data that is missing and provide that back to the research, medical, and policy communities to speed up advancements for better care.