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. GinJones.com Joined September 2022

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Juliette Kayyem @juliettekayyem

10 months ago

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/

Yamiche Alcindor @Yamiche

10 months ago

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Margaret E Atwood @MargaretAtwood

10 months ago

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Hypophosphatemia Q&A @HypophosphaBot

11 months ago

This is the end for the Hypophosphabot. Can't in good conscience provide material for AI scraping.

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Rare Disease Day @rarediseaseday

11 months ago

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/

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RareNewEngland @RareNewEngland

11 months ago

Save the date for our 10th annual Rare Disease Symposium on Friday, October 18th from 1-5 PM! #raredisease Register here: ow.ly/XfvR50TtNBO

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Elle Cole (She/her) @Cleverlychangin

11 months ago

[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

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Hypophosphatemia Q&A @HypophosphaBot

11 months ago

Looking forward to reports from #ASBMR2024 in the coming days!

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Global Genes @GlobalGenes

12 months ago

“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

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Hypophosphatemia Q&A @HypophosphaBot

12 months ago

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.

JBMRPlus @JBMRPlus

12 months ago

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Brittle Bone Society @BrittleBoneUK

a year ago

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 💙✨

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Hypophosphatemia Q&A @HypophosphaBot

a year ago

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.)

JBMRPlus @JBMRPlus

a year ago

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Hypophosphatemia Q&A @HypophosphaBot

a year ago

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.