LIVING WITH XLH
This group is designed to support adults 18 and over who are living with XLH themselves. It offers a confidential, friendly space to connect with others who understand the day-to-day realities of living with XLH — from managing symptoms and appointments to navigating work, relationships, family life, emotional stress, and self-advocacy. Group members are invited to receive support, share resources, ask questions, and talk with others who truly “get it.”
Facilitated by Network members Danaya B., Deb L., and board member Macy Brown.
Meets on the third Tuesday of every month, 7:00pm – 8:30pm ET
REGISTER HERE
CAREGIVERS GROUP
Our caregiver group is for adults who care for or support someone living with XLH. Whether you are a parent, partner, family member, or other caregiver, this is a welcoming and confidential space to connect with others who understand the caregiver experience. Come share what’s working, ask questions, exchange resources, or simply listen and feel less alone.
Facilitated by Network member Trinity B. and board member JoBeth Souza.
Meets on the third Monday of each month. 7:00pm – 8:30pm ET.
REGISTER HERE
NEWLY-DIAGNOSED
This group is for families navigating a new XLH diagnosis within the last two years. Whether you are newly diagnosed yourself, supporting a child, or helping a loved one understand what comes next, this group offers a welcoming place to ask questions, share concerns, learn from others, and find connection during the early stages of the XLH journey. You are welcome to participate as much or as little as feels comfortable
Facilitated by board member Shannon Sharp and Dr. Al Freedman, PhD.*
Meets quarterly. First meeting is Thursday, May 21st, 5:30 – 7:00pm ET.
REGISTER HERE
*Dr. Freedman is a psychologist who specializes in helping rare disease families. You can read about him at rarecounseling.com
Contact Us
The XLH Network, Inc.
911 Central Ave., #161
Albany, NY 12206
XLH Network
A Worldwide Patient Support Organization for People Living and Dealing with X-Linked Hypophosphatemia (XLH)
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