Last week’s topic was a bit depressing, so let’s try something more upbeat this week! Let’s talk about art in the rare-disorder setting!
The National Institutes of Health are launching a new awareness campaign, “Rare Diseases Are Not Rare!” and they’re inviting submissions of digital art to promote this awareness. and the ways that rare diseases have elements in common. The art can be any of the following formats:
- music video
- song (with or without sheet music)
- dramatic reading
- poem
- painting
- poster
- comic
- animation
- photo/collage
- info graphic
The focus of submissions needs to be on not just one condition, but on strategies for addressing the commonalities across multiple rare diseases. My understanding is that one example would be an idea for addressing the sort of medical PTSD that a lot of rare-disorder patients (including XLHers) experience, through a social media campaign or an educational program for clinicians. So think broadly first, and then think about how the XLH experience would be relevant. Or think of a challenge that XLHers experience that exemplifies what a lot of patients, especially those with rare disorders experience, and then how you would encourage a particular audience (patients themselves, clinicians, or the general public) to be aware of that issue, and how to improve their approach to it.
There are prizes for the NIH project, and all the details are here: https://www.challenge.gov/?challenge=rare-diseases-are-not-rare-2025-challenge Submissions can be from individuals or teams, and, beware, the deadline is coming up fast—January 2, 2026.
Finally, a note that’s not entirely upbeat, but I’ve got a real-life example of how one rare disease can exemplify issues across a multitude of chronic disorders, Mother Jones did an article on the expiration of telehealth authorizations for Medicare patients, and they quoted me (and my XLH) as an example of someone dealing with the loss of the telehealth option: https://www.motherjones.com/politics/2025/10/congress-medicare-telehealth-shutdown-funding-waivers/
I suspect that this may be one of the first times a general-interest article, outside the context of rare-disease-awareness, ever mentioned XLH! I’m sure you’ve seen plenty of articles quoting patients with rare diseases you’ve never heard of, and most people will be reacting that way to this article, but at least some readers in the chronic hypophosphatemia community will be pointing at the article and saying, “Hey, look, that’s MY (or a loved one’s) rare disease!”
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Please note that the author is a well-read patient, not a doctor, and is not offering medical or legal advice.
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