to the XLH Network’s private member portal. Use this forum to ask questions, make suggestions or just tell your story. Think of it as a Facebook group page, but open to all. We hope that you will use it as a source for connecting with others in the XLH Network community. Feel free to create your own group and invite your Network member friends and family members.
FOR NEW MEMBERS
XLH Network’s chat is for those that are looking to share, connect, and chat with other members. The XLH Network moderates this group and will share only the latest information and live streams for individuals and families.
1. Be kind and courteous
We’re all in this together to create a welcoming environment. Let’s treat everyone with respect. Healthy debates are natural, but kindness is required.
2. No hate speech or bullying
Make sure everyone feels safe. Bullying of any kind isn’t allowed, and degrading comments about things such as race, religion, culture, sexual orientation, gender or identity will not be tolerated.
3. Respect everyone’s privacy
Being part of this group requires mutual trust. Authentic, expressive discussions make groups great, but may also be sensitive and private. What’s shared in the group should stay in the group.
The authors of this website are not medical professionals, and this information does not substitute for medical care. Information on these pages is based on biomedical research, published in peer-reviewed journals, and international research conferences.
Additionally, in some cases anecdotal information is provided by subscribers to a mailing list and/or members of a forum for The XLH Network Inc.
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A Worldwide Patient Support Organization for People Living and Dealing with X-Linked Hypophosphatemia (XLH)