The XLH Network, Inc.

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The XLH Network, Inc.

The Official page of The XLH Network, Inc.

11/26/2025

💜 SAB Spotlight 💜

Meet Dr. Joshua Wellington, an expert in pain management. For many living with XLH, managing pain is an important part of daily life. As part of our Scientific Advisory Board, he brings knowledge and compassion to help ensure our community has access to the best care options.

Dr. Wellington is a leading expert in Intrathecal Care and currently works as Center for Pain Management’s Targeted Drug Delivery Director. He has 20+ years of experience implanting Intrathecal Pumps and enjoys providing interventional pain care to improve the quality of his patient's lives.

Dr. Wellington specializes in Targeted Drug Delivery, having implanted approximately 3,000 pumps. He brings years of experience annd consistently works to expand patient access to quality interventional care.

Prior to joining the Center for Pain Management, Dr. Wellington had spent 25+ years treating patients using a multidisciplinary approach, combining the latest advancements in pain management with a patient-centered focus in an academic setting.

He holds dual board certification in Physical Medicine & Rehabilitation and Pain Medicine and currently practices in Fishers, IN

11/25/2025

Save the date and join the fun! You can even be part of the action by coming on live and telling your XLH story. Or if you have any other hidden talent, we'd love to have you participate! Send us a message and be part of this important fundraising effort!

11/23/2025

XLH family, it’s that time of year! 💜
Fresh Network merch is available all November—perfect for gifting, collecting, or showing off your XLH pride.
Ornaments, mugs, scarves, hoodies, and more!

🔗 Shop now: https://www.bonfire.com/store/the-xlh-network/

11/21/2025

📣 Save the Date! XLH Camp 2026

We’re excited to announce that XLH Camp 2026 will take place July 21–25, 2026!

Join us for a week of community, learning, and unforgettable experiences designed especially for children and families impacted by XLH. More details—including registration information —will be shared soon.

Mark your calendars and get ready for an amazing summer together! 🐾💜

11/19/2025

🌟 Reminder: Family Caregiver Webinar - You're Invited! 🌟

Caring for a loved one with XLH can be both rewarding and challenging, but you don’t have to do it alone. Join us for a special Family Caregiver Webinar hosted by the XLH Network 💜

🗓 Date: November 24, 2025
🕒 Time: 7:00 PM - 8:00 PM EST
💻 Location: Online (Zoom link will be provided after registration)

This session will offer practical tools, emotional support, and shared experiences to help caregivers feel supported, seen, and empowered. Whether you’re a parent, partner, sibling, or friend, this webinar is for YOU.

💜 Don’t miss out – register today!
👉https://zoom.us/meeting/register/JUQw4GZARxeB6IpJ2feuYA

11/17/2025

Be a part of the fun!! Join us in creating this important fundraiser for The Network!

11/14/2025

***UPDATE: If you tried to purchase and the address didn't load, please try again. It has been added. We have only had a couple of items purchased. The kids look forward to receiving these packages every quarter.

🐾 Support the XLH Network Pup Squad! 🐾

The XLH Network Pup Squad brings smiles to our youngest community members through fun and educational care packages each quarter. 💜

We’re already planning for our 2026 Pup Squad packages, and you can help make them extra special! 🎁

🛍️ Support the Pup Squad by purchasing an item from our Amazon Wishlist:
🔗 https://www.amazon.com/hz/wishlist/ls/KXB8ASGB1MX9?ref_=wl_share

Together, we can make 2026 a tail-wagging year for all our XLH pups! 🐶💜

11/12/2025

🧬 Dr. Maya Doyle, MSW, PhD —professor, researcher, and champion for families living with rare disease. We’re honored to have her on our Scientific Advisory Board! 💜

Maya Doyle, MSW, PhD, is a professor of Social Work and Medical Sciences at Quinnipiac University, and has worked in pediatrics, nephrology, and rare disease for more than 25 years. She is committed to understanding the lived experience of patients and families living with rare illness and in the transition to adulthood and adult-oriented systems of healthcare. She is on the advisory boards of the Cystinosis Research Network and the XLH Network. Dr. Doyle continues her advocacy increasing genetic and genomic literacy for social workers, and is a founding member of the Social Work and Genetics Collaborative.

https://www.qu.edu/faculty-and-staff/maya-doyle/

11/10/2025

🦴 Adults with XLH — We Want to Hear from You! 💜

Are you interested in taking part in an interview to help develop a new XLH-specific physical function questionnaire?

Clinical Outcomes Solutions (COS) is looking to speak with adults living with XLH to share their experiences and perspectives. Your input will help create a questionnaire that better captures the impact of XLH on physical function and independence — a valuable tool for use in both clinical trials and healthcare settings.

🕐 Interviews last about 60 minutes
💵 Participants will be compensated for their time
🇺🇸 Open to U.S. residents only

👉 Learn more and sign up here: https://conta.cc/3XiwZT9

11/09/2025

Upcoming XLH Learning Opportunities 🧬

XLH can have significant effects on dental health, requiring specialized care and preventive strategies. Join us for an informative session highlighting the importance of dental monitoring and effective ways to manage oral health challenges.

In addition, don’t miss our Genetics Webinar, where experts will explain the role genetics play in XLH — including how the condition is inherited and what that means for families.

Both sessions are hosted by Kyowa Kirin and offer valuable insights for anyone living with or caring for someone with XLH.

Don’t forget to register: xlhlink.com/patient-events

11/07/2025

💜 Attention XLH Network Members!
The Assistance Fund (TAF) Reenrollment is now open!

Reenrollment takes place in the last quarter of the year (November–December) and is disease-program specific. Programs are divided into two groups — Purple and Blue — with different reenrollment periods.

💜 XLH is part of the Purple Group.
That means reenrollment runs from November 5–21, 2025.

✅ Be sure to complete your reenrollment during this window to maintain your assistance.

Visit tafcares.org
to confirm details and access your reenrollment portal.

Address

911 Central Avenue, # 161
Albany, NY
12206

Website

http://xlhnetwork.org/

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