Get Involved

The XLH Network is committed to building a strong community for those living with XLH.  To build a stronger community we need more members involved.  One of the many ways to get involved is by becoming an advocate.   


Advocacy is about helping people find their voice to make a change.  The power of Advocacy is that many voices are louder than just one.  The XLH Network hopes to make our voices so loud they are heard across the nation. 


How to Advocate: 


Participate in an Advocacy Day Event 















  • Volunteer as an XLH Awareness Day Ambassador for your state and request the XLH Awareness Day proclamation from your Governor 

  • Requests are sent every spring for our June event. Watch for request for volunteers on the XLH Network Facebook page. 

  • Virtual XLH Awareness Day on Capitol Hill (typically held in June)

  • Watch for registration information from the XLH Network.

  • Know our “ASK” (Items we will ask our members of Congress to support or co-sponsor) 

    • (Click on the "ASK" below to see details of the legislation)


Tell your story 


How to prepare your story: 

  • Introduce yourself 

  • Briefly explain XLH 

  • Focus on struggles you have encountered related to your reason for advocating 

  • Tell about why there needs to be change and ask for support


Meet with a member of Congress 

















How to prepare for your meeting: 

  • Get to know your members of Congress 

  • Look at their Legislative scorecard to see what issues they support 

  • Visit their congressional website. If you find something in common that could be a conversation starter. 

  • Determine your legislative “Ask” 

  • This is usually a proposed piece of legislation or policy that you will ask the member of Congress to support or co-sponsor. 

  • Do not be disappointed if your legislator does not attend the meeting personally their staffer is just as important.  They are the ones that have the legislator’s ear.   

  • Most meetings only last 15-20 minutes  

  • Your story should only be 2-3 minutes to allow for everyone on the call to share their story.   


Post-Meeting Considerations:

You have just made a important connection with your member of Congress or staff.  In any relationship you must take the time to help it grow.  Legislators are more likely to take interest and help make a change if they see the direct impact. 


  • Post to Social Media – Ask in your meeting if you can take a picture and post that on social medial with #XLHAdvocacy 

  • Send a Follow-up – You will want to send a thank you by mail or email to your legislators and their staff for meeting with you.  Ask them to follow-up with you with any information regarding your “Ask”.  Include your "Leave Behind" with your thank you to put a face with the name. 

  • Leave Behinds – If you would like your own personalized leave behind just email with 1-2 pictures and a short summary of your story. 




Write a letter or email 

What if you can not meet with your member of Congress, do not worry.  You can still advocate by writing a letter or email to your legislators.  Follow the steps to "Tell your story".  Then include any documentation you have regarding the reason you are advocating.