The XLH Network, Inc.

04/13/2026

We are rolling out our new Peer Support Groups just in time for Mental Health Awareness Month in May!

Right now we are planning three groups: One for caregivers, one for the newly-diagnosed families, and one for general support for living with XLH.

We would love to hear back from you about other possible group topics, and what days/times are best for you if you're interested in attending. You can shout it out here, or email executivedirector@xlhnetwork.org.

04/09/2026

FIRST LOOK: People often talk about finding their "people" when they come to XLH Day for the first time. So our mascot this year is "Hope"...the rare disease zebra proudly sporting XLH Network colors. She'll be leading the way to Indy, where we will have amazing speakers, networking and social opportunities, a trip to the zoo, and so much more! More details coming soon, and registration will open in June. Follow Hope to XLH Day 2026!

04/08/2026

🐾 PUP SQUAD MEETING 🐾
Join us for our next PUP Squad meeting on April 19th at 3:00PM ET/2:00 PM CST/12:00PM Pacific!
Theme: Stress Management & Mental Health
This session will focus on helping kids explore ways to manage stress, build resilience, and support their mental well-being—all in a fun and supportive environment.

Registration is required: https://zoom.us/meeting/register/YbhLWfEqSzGbjB0kO9wd_Q

Parents & Caregivers:
We’ll be hosting a parent meeting immediately after the kids finish. We hope you’ll stay on to:
• Meet other families
• Discuss ideas for more formal parent meet-ups
• Join in open conversation and support

We look forward to seeing everyone there!

04/03/2026

Make a Difference: Become an XLH Awareness Ambassador!

June is XLH Awareness Month, and June 23 is our big day—but we can’t do it alone. We’re looking for passionate volunteers to help us spark conversation and spread awareness in every state! (And there are still plenty of states that are still in need of Ambassadors).

As an XLH Awareness Ambassador, you’ll be the face of change by:

📜 Leading the Charge: Request an official state proclamation in your name.
📣 Sharing Your Story: Be featured on our social channels to show the world what XLH looks like.
📰 Making Headlines: Opportunities to work with local media to share your journey and put XLH on the map.

Your voice has the power to bring visibility and support to our community. Ready to lead?
Join us today!
Email shannon.sharp@xlhnetwork.org with your Name, Address, and Date of Birth to get started.

03/30/2026

Our board president, JoBeth Souza, submitted an article to the patient voice section of Rare Revolution magazine. Check it out here:

JoBeth Souza’s daughter was diagnosed with X-linked hypophosphatemia when she was a child. She shares her daughter’s journey with rare disease—a journey of resilience, acceptance and finding strength and purpose from a new furry family member

03/27/2026

Please JOIN US for an XLH Regional event at Knoebels Amusement Park Pavilion C May, 16, 2026 at 10am - 5pm. We will be having lunch, chatting and meeting others in the XLH community - and, of course, enjoying the amusement park!

📌 The park has free parking and free admission.

📌 They do have a disability accessibility pass that you need to sign up for in advance if you feel that this will be beneficial for you or your family. The link is included for the accessibility pass below:

https://www.accessibilitycard.org/

📌 For more information or questions reach out to Kathy Klase atn kklase@outlook.com.

03/20/2026

👉 Did you know that the National Park Service offers a FREE Access Pass for people with disabilities? This pass grants you access to over 2,000 federal recreation sites, including national parks, wildlife refuges, and forests. ✋ Who's going to start planning an XLH Park Meetup? 🌲 Let us know in the comments!

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03/18/2026

Become an XLH Awareness Ambassador!
June is XLH Awareness Month, and June 23 is XLH Awareness Day—and we need YOU to help us raise awareness across the country!

We’re looking for passionate volunteers to serve as XLH Awareness Ambassadors in their state. This is a powerful opportunity to make a real impact in your community.

As an XLH Awareness Ambassador, you will:

📌Have an official state proclamation requested in your name declaring June 23 as XLH Awareness Day or June as XLH Awareness Month
📌Be featured on our social media by sharing your personal XLH story
📌Help amplify awareness locally through a press release sent to media outlets in your area (including your contact information)

Your voice can help bring visibility, understanding, and support to the XLH community.

Ready to get involved?
Email shannon.sharp@xlhnetwork.org with your:
Name
Address
Date of Birth

Let’s work together to shine a light on XLH this June! 💜

03/16/2026

Are you interested in being part of our mental health/peer-support group team? We are looking for volunteers to lead groups for fellow XLH'ers. Training and on-going support will be provided. Some experience in community work is appreciated. Please email Susan at executivedirector@xlhnetwork.org if you are interested or if you have questions.

Thank you!

03/11/2026

Living with XLH affects more than bones—it can impact our hearts and minds.
Don’t miss “Navigating the Emotional and Social Impacts of XLH,” a free webinar hosted by Kyowa Kirin.
March 31, 2026, 7:30 pm EST and 9:30 pm
Register here: xlhlink.com/patient-events

03/09/2026

This year one of our primary goals is to ensure that we offer mental health and wellness support to our members. Many of you who attended XLH Day in Las Vegas expressed an interest in attending XLH-related support groups.

Help us plan: what topics are most important to you? What times/days are easiest for you to attend via Zoom? Any other suggestions?