The XLH Network, Inc., 911 Central Avenue, # 161, Albany, NY (2025)

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.

11/05/2025

🌟 You’re Invited! 🌟
Join us for our upcoming Family Caregiver Webinar, hosted by the XLH Network 💜

Caring for a loved one with XLH can be both rewarding and challenging. This special session will provide practical tools, emotional support, and shared experiences to help caregivers feel seen, supported, and empowered.

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

Whether you’re a parent, partner, sibling, or friend supporting someone with XLH, this webinar is for you. 💜

👉 Register today: https://zoom.us/meeting/register/JUQw4GZARxeB6IpJ2feuYA

11/01/2025

💜 November is National Family Caregivers Month 💜

Behind every person living with XLH is often someone who gives tirelessly — a caregiver who supports, advocates, and loves without limits.

This month, we honor the parents, partners, family members, and friends who walk alongside those living with XLH every step of the way. Your strength, compassion, and dedication make an incredible difference in our community.

Let’s take a moment to say thank you to all caregivers — for your patience, your persistence, and your heart. 💜

➡️ Share a post or photo in the comments to celebrate a caregiver who’s made an impact in your XLH journey.

10/31/2025

🎃 Happy Halloween from Link and the XLH Network! 👻💜

Our favorite XLH mascot, Link, is all dressed up and ready for some spooky fun! 🦴✨

We’d love to see how you and your families are celebrating — costumes, pumpkins, pets, or treats! 🎭🐾🍬
📸 Share your Halloween photos in the comments and let’s fill our feed with some frightfully fun XLH spirit!

💜

10/29/2025

Meet the Experts!

Introducing Dr. Suzanne Jan de Beur, a key member of our Scientific Advisory Board. Her work helps ensure that our programs are evidence-based and impactful. 🔬💜

Suzanne Jan de Beur, M.D., is the Gerald D Aurbach and Professor of Endocrinology and Chief of the Division of Endocrinology and Metabolism at University of Virginia School of Medicine.

Dr. Jan de Beur graduated from Cornell University and Cornell Weill Medical College. She completed the Osler Medical Residency at the Johns Hopkins Hospital and her fellowship in Endocrinology and Metabolism at the Johns Hopkins University School of Medicine.

As a Physician-Scientist and a practicing Endocrinologist, her clinical and research work focus on understanding rare and metabolic bone diseases at the basic level and translating these observations to the bedside. She has helped characterized the molecular basis of several disorders of mineral metabolism including pseudohypoparathyroidism, progressive osseous heteroplasia, and tumor induced osteomalacia. Her work has led to important new treatments for X-linked hypophosphatemia, tumor induced osteomalacia and osteogenesis imperfecta.

She is an internationally recognized expert in osteoporosis and rare bone diseases and has contributed to many clinical guidelines for the care of patients with these disorders.

Dr. Jan de Beur is a member of several professional and honorific societies including the Endocrine Society, the American Society of Bone and Mineral Research (ASBMR) and the Association of Osteobiology. She is a Past President of the American Society of Bone and Mineral Research and a Fellow of the ASBMR. Dr. Jan de Beur is the recipient of the Shirley Hohl Award and the Boy Frame Award of the American Society of Bone and Mineral Research.

The XLH Network, Inc.

11/19/2025

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