The XLH Network, Inc. (@XLH_Network) header
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The XLH Network, Inc.

@XLH_Network

Patient support group w/ 501(c)3 charitable status, representing patients/families with X-Linked Hypophosphatemia (XLH) or related phosphate-wasting disorders

 global
xlhnetwork.org/
Joined August 2010
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Photo by The XLH Network, Inc. (@XLH_Network)Photo by The XLH Network, Inc. (@XLH_Network)Photo by The XLH Network, Inc. (@XLH_Network)Photo by The XLH Network, Inc. (@XLH_Network)Photo by The XLH Network, Inc. (@XLH_Network)Photo by The XLH Network, Inc. (@XLH_Network)Photo by The XLH Network, Inc. (@XLH_Network)Photo by The XLH Network, Inc. (@XLH_Network)Photo by The XLH Network, Inc. (@XLH_Network)Photo by The XLH Network, Inc. (@XLH_Network)
It's not too late! Register for our last Men's Group of 2022! Registration Link below or click here: ow.ly/R4EJ50LXsbV
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We are down to two groups left in 2022! Don't forget to register!
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To register for Aging Group: us02web.zoom.us/meeting/regi…
To register for Men's Group: us02web.zoom.us/meeting/regi…
Our Fall Newsletter is hot off the press! ow.ly/NEAt50LOb7N
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We've been privileged to gain many new members in 2022. We want to get to know you! Tell us where you're from and if you are spontaneous or inherited, or have some other xlh-related disorder. Shout out in the comments below!
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No all skeletons are the same! Use Halloween as an opportunity to raise awareness for XLH. Attach a Happy Halloween tag on your trick or treat candy with information about XLH.
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Happy International XLH Awareness Day to all!
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ICYMI: Gin Jones talks about enthesopathy in this week's blog. Good information and good insight into this common symptom of XLH. ginjones.com/enthesopathy/
Enthesopathy

Enthesopathy

Technically, enthesopathy is the calcification of tendons and ligaments where they attach to bones (insertion points). It can happen to anyone, with XLH or not, but it happens earlier and more exte…

ginjones.com
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If you want a little extra support navigating XLH as an older adult, join us next week! Open to all Network members. Register here: ow.ly/O46t50L3LB6
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What to watch for this month!
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If you haven't signed up for BeyondXLH yet, what are you waiting for?
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Whether you are an XLH'er, a caregiver, or a friend...we can all use some tips for staying healthy this Fall. Check out these recommendations from the CDC: ow.ly/xPvv50KSYbl and Happy Monday!!
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Colorful leaves, crisp air and pumpkins! Happy Autumn!
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Many people living with XLH experience dental issues which can be costly. ELSA has worked tirelessly to pass a bill requiring insurance companies to help. Please see below for how you can assist in this effort. For more info, go to: ow.ly/uts850KNMNl
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Newborn screening leads to early diagnosis and early treatment for many rare diseases. Please consider getting involved and reaching out to your representatives this month.
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From Gin Jones's blog today: good advice about keeping this article handy to help family, friends, and even your medical team understand more about XLH. Read more about what she has to say here: ow.ly/oCr150KBZB8
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Our groups are starting up again next month! Watch this space for details!
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Help us raise money for 2023 and beyond!
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Have you ever wondered where other Network members live? This map tells you how many members are in each state. The red and orange pins show the locations of our member events for the last 5 years. Hmmmm...where should we go in 2023? Sound out in the comments!
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