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.

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.

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.*