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The International XLH Alliance

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The International XLH Alliance

WE ARE AN INTERNATIONAL ALLIANCE OF PATIENT GROUPS FOR INDIVIDUALS AFFECTED BY X-LINKED HYPOPHOSPHATEMIA AND RELATED DISORDERS

15/07/2026

💜 Let’s help our XLH kids in New Zealand! 🤝

PHARMAC is considering funding Crysvita (Burosumab) for children with XLH, and your consumer comment could help make a real difference.

The Rare Disorders Advisory Committee meeting is scheduled for 29 July 2026. While there isn’t a formal cut-off date for consumer submissions, submitting your comment as soon as possible is encouraged.

Anyone with lived experience of XLH—including patients, carers, family members, healthcare professionals, and patient advocacy organisations from around the world—are encouraged to share their experience to help PHARMAC understand the impact of XLH and the importance of equitable access to treatment.

Together, let’s stand behind our New Zealand XLH community and help give their children the best chance of accessing treatment.

💜 Every voice matters.

Submit your consumer comment:
https://www.pharmac.govt.nz/about/expert-advice/hearing-lived-experiences/consumer-relations-team

View the meeting agenda:
https://livenews.co.nz/2026/05/29/agenda-for-july-2026-rare-disorders-advisory-committee-meeting/

XLH Australia Inc - Public Page
XLHCommunity

https://www.instagram.com/p/Dau4smSyKuE/?utm_source=ig_web_copy_link&igsh=MzRlODBiNWFlZA==

26/06/2026

We are delighted to welcome our new member from Guatemala!

Guatemala Xlh is dedicated to raising awareness of rare diseases and increasing public understanding of X-linked hypophosphatemia (XLH), including its genetic causes, symptoms, and the challenges of living with the condition on a daily basis.

Its mission is to ensure that affected individuals and their families have access to reliable information about available treatment options, appropriate medical follow-up, and effective disease management. By sharing knowledge and experiences, the organization aims to help other families avoid the difficulties and uncertainties that many patients have faced in the past.

In addition, the organization strongly supports patients’ right to advocate for their own needs and to actively participate in decisions concerning their healthcare and quality of life. Through education, awareness, and community engagement, it strives to empower patients and contribute to improved recognition and care for people living with XLH.

23/06/2026

🩵🦓 June 23 – XLH Day

Today, we join the XLH community across the United States in raising awareness for X-Linked Hypophosphatemia (XLH), a rare genetic disease that affects people of all ages around the world.

Like the stripes of a zebra, every journey with a rare disease is unique. Behind every diagnosis is a story of strength, resilience, and hope. Together, we stand with patients, families, caregivers, and advocates who continue to inspire and support one another every day.

On this XLH Day, let’s amplify awareness, encourage understanding, and remind everyone living with XLH that they are never alone.

💙 Every voice matters.
🦓 Every story matters.
🌍 Together, we can make rare diseases visible.

17/06/2026

A very warm welcome to 好磷社 as a new member of the International XLH Alliance 💙

Founded in November 2024 by Ashley Chung and Vice Chairperson Barbara Yiu, the Hong Kong XLH Association 好磷社 was created after several adults living with XLH met for the first time and realized how different their experiences with diagnosis, information, and treatment had been. Despite living in the same city, many families had faced delayed diagnoses, limited awareness, and unequal access to care.

Their mission is to unite people affected by X-linked hypophosphatemia (XLH), support patients and families, promote awareness and understanding of this rare disease, and strengthen collaboration with healthcare professionals, researchers, and organizations around the world.

Since its founding, the association has connected with other XLH families throughout Hong Kong and experienced the power of collective advocacy. In 2026, they celebrated a major milestone: children with XLH in Hong Kong are no longer subject to restrictions based on bone age and can continue the new drug treatment until the age of 18.

Today, with the support of their medical advisors in pediatric and adult endocrinology, they continue to advocate for earlier diagnosis, better access to treatments, stronger patient support, and an improved quality of life for everyone affected by XLH.

💙 Together, they are building a stronger XLH community in Hong Kong and ensuring that no family has to go through this alone.

16/06/2026

Will you be attending 𝗜𝗖𝗖𝗕𝗛 𝟮𝟬𝟮𝟲 in Montreal, Canada, from June 27–30, 2026? ☀️

Start the conference by joining the 𝗫𝗟𝗛 𝗠𝗮𝘀𝘁𝗲𝗿𝗰𝗹𝗮𝘀𝘀: 𝗔𝗱𝘃𝗮𝗻𝗰𝗲𝘀 𝗶𝗻 𝗥𝗲𝘀𝗲𝗮𝗿𝗰𝗵, 𝗖𝗹𝗶𝗻𝗶𝗰𝗮𝗹 𝗖𝗮𝗿𝗲, 𝗮𝗻𝗱 𝘁𝗵𝗲 𝗣𝗮𝘁𝗶𝗲𝗻𝘁 𝗘𝘅𝗽𝗲𝗿𝗶𝗲𝗻𝗰𝗲 on Saturday morning – a unique 3-hour interactive educational workshop bringing together leading clinicians, researchers and patient advocates.

The morning begins with breakfast and networking at 7:30 a.m., followed by an engaging program featuring:

🔹 The latest developments in XLH research and clinical care
🔹 An overview of the recently published international XLH guidelines
🔹 A multi-generational patient perspective on living with XLH
🔹 Insights into the future of XLH research, care models, and long-term outcomes

Don’t miss the session on 𝗔𝗱𝘃𝗼𝗰𝗮𝗰𝘆 𝗮𝗻𝗱 𝗣𝗮𝘁𝗶𝗲𝗻𝘁 𝗥𝗲𝘀𝗼𝘂𝗿𝗰𝗲𝘀, where representatives from The XLH Network, Inc (U.S.), Canadian XLH Network and the International XLH Alliance will discuss the vital role of patient advocacy, support networks, and resources for the XLH community worldwide.

See the full workshop agenda and speaker lineup on the ICCBH website (https://lnkd.in/dT-zpGqj) Find Link in Storys.

📅 𝗫𝗟𝗛 𝗠𝗮𝘀𝘁𝗲𝗿𝗰𝗹𝗮𝘀𝘀: Saturday, June 27, 2026 | 7:30 a.m. – 11:00 a.m.
📍 𝗟𝗼𝗰𝗮𝘁𝗶𝗼𝗻: ICCBH Venue, Montreal, Canada

Dr. Erik Imel, Dr. Chelsey Grimley, Dr. Adalbert Raimann, Dr. Leanne Ward, Shannon Sharp, JoBeth Souza, Shari Van Vugt, and Elizabeth Olear, International Society for Children’s Bone Health

We look forward to seeing you there!

04/06/2026

💜 Canada is Lighting Up for XLH Awareness Day!

06/05/2026

On May 6, we wish everyone in the Osteogenesis Imperfecta community a meaningful Wishbone Day. 💛
Osteogenesis Imperfecta Federation Europe

Today, we stand with all people living with Osteogenesis Imperfecta, their families, caregivers, and everyone working to improve awareness, care, and quality of life.

Wishbone Day is a reminder that visibility matters. People with OI deserve more than recognition — they deserve equal participation, accessible environments, informed support, and a strong commitment to better treatment options.

We call for more research, more understanding, and more inclusion in every part of society. Every voice, every story, and every step toward change counts.

Together, we can help create a future where people with OI are heard, seen, supported, and fully included. 💛

27/04/2026

We are pleased to introduce our new member organization from Peru 🇵🇪 XLH Raquitismos Perú

A non-profit organization created to support people affected by inherited rickets and osteomalacia, as well as their families and caregivers.

The Association’s mission is to help patients with X-linked hypophosphatemic rickets in Peru improve their quality of life, primarily through early diagnosis and treatment. As a non-profit organization, the Association focuses on providing support to patients and their families, who experience symptoms that impact their health and development.

Its objectives include providing information and resources to raise awareness of the disease, as well as creating a community by offering a space for patients and their families to connect, share experiences, and support one another. The Association also promotes research and improved care for people with XLH in Peru.

18/04/2026

A very warm welcome to XLH Poland Foundation as a new member of the International XLH Alliance. 💙

Fundacja XLH Polska was created during an especially difficult and emotional time, in the midst of the fight for access to modern therapy for children living with XLH. Out of those challenging circumstances, something deeply meaningful was born: a strong and compassionate organization built on personal experience, determination, and shared values.

Led by Milena Nikoforow, Aleksandra Milczarek, and Julia Obrębowska-Borek, the Foundation has become an important space for support, education, advocacy, and real change for people and families affected by XLH.

Their courage, dedication, and heartfelt commitment to the community make XLH Poland a truly valuable part of the wider patient community. It is a pleasure to welcome them to the network. ✨

RareDisease RareDiseaseCommunity PatientOrganizations StrongerTogether

28/02/2026

TODAY IS RARE DISEASE DAY
🩷 HELD ON THE LAST DAY OF FEBRUARY
💚 ~ 300 AFFECTED MILLION PEOPLE WOLRDWIDE
🩵 OVER 7,000 RARE DISEASE
💜 70% BEGIN IN CHILDHOOD

EQUITY MEANS FAIR ACCESS TO DIAGNOSIS, TREATMENT, CARE AND OPPORTUNITIES. RAISING AWARENESS AND GENERATING CHANGE FOR THE 300 MILLION PEOPLE WORLDWIDE LIVING WITH A RARE DISEASE, THEIR FAMILIES AND CARERS.

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https://xlhalliance.org/

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