In honor of summer, when everyone seems to be busier than ever, I’m going to at least try to keep the next few entries a little shorter than usual.
Today, a quick reminder about the research being done as a collaboration between The XLH Network, Inc. and Quinnipiac University’s Frank Netter School of Medicine on “A comparison of knowledge, attitudes, and experiences of patients with inherited v. de novo [spontaneous] forms of X-linked hypophosphatemia (XLH).”
If you haven’t already responded to the survey, how about spending the time you save with this shorter entry, by doing the online survey (and if you have a little more time, you can agree to do the optional, half-hour followup by Zoom). It really doesn’t take long, and patient-focused research is so important.
Please note that, for a variety of legitimate reasons, this study appears to be limited to XLH patients only (not autosomal versions or TIO), so my usual inclusionary language about ALL the hypophosphatemias doesn’t apply here. On the plus side, I believe it’s open to patients worldwide, as long as you can read/answer in English.
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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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