Hypophosphatemia Q&A
@HypophosphaBot
Q&A about chronic hypophosphatemia (x-linked, autosomal, or #TIO) from a decidedly patient-focused POV. #XLH patient, not a doctor, not giving medical advice.
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Q: Where can I find more about hypophosphatemia from the patient perspective? A: Voice of the Patient report for the EL-PFDD on hypophosphatemia; Patient Perspective in Journal of Endo Society, and collection of essays in Weak Bones, Strong Wills. Links below.
100% certain. For coverage of this 100% certainty, read my discussion with @froomkin on how newsrooms must have plans for this moment of disinformation. It isn't just about accuracy. It is about ensuring that we don't feed the disinformation beast. 1/
Senior Harris campaign officials say aides "fully expect" Trump will declare victory before all votes are counted and that there are hundreds of lawyers around the country and in battleground states with "thousands of pages of pleadings" ready to fight GOP legal maneuverings.
This is the end for the Hypophosphabot. Can't in good conscience provide material for AI scraping.
As we approach the launch of the #RareDiseaseDay campaign, we're excited to share that our 2025 resources are now live on our website! 📚🎉 You can find them using the following link: rarediseaseday.org/downloads/
Save the date for our 10th annual Rare Disease Symposium on Friday, October 18th from 1-5 PM! #raredisease Register here: ow.ly/XfvR50TtNBO
[People living with rare diseases get a PhD in their condition]. You have to become the expert to create that plan” - Charlene Rigby @GlobalGenes #rarehealthequity #raresummit
![Cleverlychangin's tweet image. [People living with rare diseases get a PhD in their condition]. You have to become the expert to create that plan” - Charlene Rigby @GlobalGenes #rarehealthequity #raresummit](https://pbs.twimg.com/media/GYaRJSLaMAE_TKV.jpg)
![Cleverlychangin's tweet image. [People living with rare diseases get a PhD in their condition]. You have to become the expert to create that plan” - Charlene Rigby @GlobalGenes #rarehealthequity #raresummit](https://pbs.twimg.com/media/GYaRJSRaMAgbmPo.jpg)
Looking forward to reports from #ASBMR2024 in the coming days!
“How did the discussions with your patient partner impact you?” 💬 The feedback that we’ve received from medical students who’ve participated in our RARE Compassion Program at the Ross University School of Medicine has been inspiring and promising! #RARECompassionProgram
While it's good to have more data confirming that the #XLH patient's symptoms and experiences are the same around the world, these piecemeal collections of data are just repeating what we already know. We need a comprehensive natural history study to find out what we DON'T know.
A new study in #JBMRPlus collected information on Japanese and South Korean patients with X-linked hypophosphatemic rickets/osteomalacia to better understand the disease progression, life quality and current treatments @ASBMR @OUPMedicine Read more here: ow.ly/tTK650Tnbuu
You may have heard of the Adult Rare Bone Disease Network, but what is it? 🤔 Slide along for a short description and visit the following link to find out more, see who’s involved, and learn how the network can benefit you: shorturl.at/7aFcV #AdultRareBoneNetwork 💙✨
Really interesting data on employment/disability among adult #XLH patients in a pharma-sponsored natural history study. (Just for the record, I loathe the "Disease Monitoring Program" terminology, which is unique to Ultragenyx, adding unnecessary confusion.)
Authors of this #JBMRPlus article report that full-time employment levels are low in adults with XLH, and unemployment and disability payment rates are high, suggesting that XLH has a substantial impact on work productivity. @OUPMedicine Read more here: ow.ly/3pZQ50SUb9R
Really interesting. If I'm reading this right, it's saying that despite #XLH patients' tendency toward excess weight, it does not seem to increase the risk of diabetes in the same way that being overweight increases the risk of diabetes in the general population.
Authors of this #JBMRPlus article report that full-time employment levels are low in adults with XLH, and unemployment and disability payment rates are high, suggesting that XLH has a substantial impact on work productivity. @OUPMedicine Read more here: ow.ly/3pZQ50SUb9R
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