The XLH Network, Inc.

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The XLH Network, Inc. banner
The XLH Network, Inc.

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 가입일 Ağustos 2010
155 팔로잉647 팔로워
The XLH Network, Inc.
The XLH Network, Inc.@XLH_Network·
We are down to two groups left in 2022! Don't forget to register!
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The XLH Network, Inc.
The XLH Network, Inc.@XLH_Network·
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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The XLH Network, Inc.
The XLH Network, Inc.@XLH_Network·
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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The XLH Network, Inc.
The XLH Network, Inc.@XLH_Network·
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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The XLH Network, Inc.
The XLH Network, Inc.@XLH_Network·
If you haven't signed up for BeyondXLH yet, what are you waiting for?
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The XLH Network, Inc.
The XLH Network, Inc.@XLH_Network·
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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The XLH Network, Inc.
The XLH Network, Inc.@XLH_Network·
Colorful leaves, crisp air and pumpkins! Happy Autumn!
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The XLH Network, Inc.
The XLH Network, Inc.@XLH_Network·
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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The XLH Network, Inc.
The XLH Network, Inc.@XLH_Network·
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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The XLH Network, Inc.
The XLH Network, Inc.@XLH_Network·
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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The XLH Network, Inc.
The XLH Network, Inc.@XLH_Network·
Our groups are starting up again next month! Watch this space for details!
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The XLH Network, Inc.
The XLH Network, Inc.@XLH_Network·
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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