Find a place where you belong.

THE XLH NETWORK IS PROUD TO HOST EVENTS THAT CONNECT XLH-AFFECTED INDIVIDUALS, THEIR FAMILIES, AND THE BROADER MEDICAL COMMUNITY. SEE BELOW FOR THIS YEAR'S HIGHLIGHTS:

 

 

Copy of Copy of Copy of Copy of Theme Elements (1).png

Registration for Virtual XLH Day 2020 opens on Friday, August 28th.  Cost is only $25 per household for the entire week! Registration fee includes:
1) Admission to over 12 sessions for all attendees in your home.
2) Event App so you can participate from anywhere (App sent out prior to event)                                    
3) Event T-Shirt (for up to 4 attendees included on registration).
4) A SWAG Bag sent to each registered household prior to event.

 

              CLICK HERE TO REGISTER

 

Register early to make sure to get your SWAG bag and T-Shirt before October!

  

                  AGENDA   (all times Eastern Time)                                      
        Date                     Start Time           Session Name                                          
Saturday, 10/3/20 11:00 AM Pre-Event Session: XLH 101 for Newly Diagnosed Families
     
Saturday, 10/3/20 12:00 PM Welcome & Introduction to the Week
     
  12:15 PM

The Rare Journey - It's What Unites Us                Nicole Boice, founder of Global Genes

     
  1:15 PM Break
     
  1:30 PM XLH Today: How the Landscape has Changed
     
  2:30 PM Break with Yoga Stretch
     
  2:45 PM XLH & Dental Care
     
  3:45 PM Pete Dankelson Plays Motivation
    PetesDiary.com
     
  4:30 PM First Day Closing Remarks: The Week Ahead
     
  5:00 PM

Kids Talent Showcase (tentative)

     
     
Tuesday, 10/6/20 7:30 PM Men & XLH: Support and Discussion Group
     
Wednesday, 10/7/20 7:30 PM Transitional Toolkit Take-Aways
     
Thursday, 10/8/20 7:30 PM Support for the Caregivers
    Cristol O'Laughlin from Angel Aid Cares
     
     
     
Saturday 1010/20  11:00 AM Pre-Event Session: Children's Activity
     
Saturday, 10/10/20 12:00 PM Welcome Back
     
  12:10 PM The XLH Network: Behind the Scenes
     
  12:30 PM What's Next for XLH: Research and Physical Therapy News
     
  1:30 PM Break
     
  1:45 PM Coping with XLH: A mental health panel discussion
     
  2:45 PM Break with Yoga Stretch
     
  3:00 PM Sean Bamstark & Kyle Bryant (topic TBA)
    Two Disabled Dudes podcast
     
  4:00 PM Awards/Game Winners/Volunteer Recognition
     
  5:30 PM Celebrate & Social Hour