The International XLH Alliance

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

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

We are pleased to introduce our new member organization from Peru 🇵🇪 XLH Raquitismos PerúA non-profit organization creat...
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.

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

TODAY IS RARE DISEASE DAY 🩷 HELD ON THE LAST DAY OF FEBRUARY 💚 ~ 300 AFFECTED MILLION PEOPLE WOLRDWIDE 🩵 OVER 7,000 RAR...
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.

The European Reference Networks (ERN) working group on transition is currently conducting a patient and family survey.Th...
07/02/2026

The European Reference Networks (ERN) working group on transition is currently conducting a patient and family survey.
The focus is on the transition of medical care for rare diseases—from pediatric and adolescent medicine to adult medicine. The aim of the survey is to highlight the experiences of young patients from across Europe and to improve care in the long term.

Participation takes about 5–10 minutes
Available in 10 EU languages
No age limit – the questionnaire automatically adapts depending on whether you are before, during, or after the transition

If you are affected or support relatives: Your perspective is valuable and helps to improve the design of this important transition.
https://tinyurl.com/patientsurveyERN

We would like to share with the community an unprecedented study conducted by an interprofessional and international tea...
26/01/2026

We would like to share with the community an unprecedented study conducted by an interprofessional and international team from UNIFESP (Federal University of São Paulo), a highly regarded public university in Brazil. This is a pioneering study that provides sociodemographic data on the Latin American continent, something that has been lacking in the international literature on people with XLH.

Sociodemographic studies are important for understanding the needs of a population and thus proposing public policies. Thus, a pioneering study examined the sociodemographic contexts of people with XLH in Latin America, a developing continent that has experienced the historical impact of colonization and therefore faces several challenges related to social inequality. This fact is reflected in various aspects of this group’s lives, where in the main results, participants reported an average of 13 years to obtain the correct diagnosis, four years longer than in Europe. Latin Americans with XLH reported suffering from chronic pain and structural ableism in 90% of cases. Another very interesting finding is that, although participants have a high level of education, this does not guarantee access to and permanence in the formal labor market.

Access the full article: https://tinyurl.com/Medcraveonline

Note: The first author is a researcher and biologist who is completing her doctorate in the Interdisciplinary Graduate Program in Health Sciences at UNIFESP-SP (Brazil) and also lives with the condition.

New survey: What really helps you in your life with a rare disease?EURORDIS – Rare Diseases Europe has launched a new gl...
18/11/2025

New survey: What really helps you in your life with a rare disease?EURORDIS – Rare Diseases Europe has launched a new global survey through its Rare Barometer initiative to find out what support services and resources best help people with a rare or undiagnosed disease and their families to cope with everyday life!
What is being investigated? What helps you cope with everyday stress, pursue a job/education, and maintain social contacts.Who can participate? Affected individuals and family members worldwide.
Available in 25 languages!Your experiences are crucial in advocating for better and more needs-based support!
💪👉 Share your perspective

https://shorturl.at/sT9nE

23/10/2025

Today we honor XLH Awareness Day💙
A moment to give voice to those living with X-linked Hypophosphatemia, raise understanding, and stand together for earlier diagnosis, better care, and more hope.
Every story matters, every step counts.

Today is International XLH Awareness Day X-linked Hypophosphatemia (XLH) is a rare, lifelong condition that affects bon...
23/10/2025

Today is International XLH Awareness Day
X-linked Hypophosphatemia (XLH) is a rare, lifelong condition that affects bones, teeth, and overall health. living with XLH, every day can bring challenges - but also incredible strength and resilience.
Today, we stand together to:
Raise awareness of XLH
Share the voices of those affected by this rare condition
Support research, care, and community connection
You are not alone. Together, we can shine a light on XLH and work towards a brighter future for everyone affected.
Join us by sharing this post, learning more, and helping spread awareness.

🌟 Today is International XLH Awareness Day! 🌟Every year on October 23, we raise awareness worldwide about X-linked hypop...
23/10/2025

🌟 Today is International XLH Awareness Day! 🌟
Every year on October 23, we raise awareness worldwide about X-linked hypophosphatemia (XLH)—a rare, genetic bone disorder that affects not only the skeletal system but also the mineralization of teeth.
The aim of this day is to raise awareness of XLH, increase understanding, and give those affected a voice.

Together, we can help ensure that XLH is detected earlier, treated better, and discussed more openly.
Let’s share knowledge, raise awareness, and show solidarity—today and every day. 💪✨

🌍 World Mental Health Day — October 10 🌍Today is an important reminder that mental health is part of every health journe...
10/10/2025

🌍 World Mental Health Day — October 10 🌍
Today is an important reminder that mental health is part of every health journey — including life with a rare condition like XLH.
We invite our community to participate in the Rare Barometer survey, which explores mental health and daily life experiences of individuals living with hashtag or a rare or undiagnosed condition.
🧩 Created by EURORDIS-Rare Diseases Europe , this global survey (available in 25 languages) is open to both patients and caregivers. Your input will help shape understanding and support around mental health in rare disease communities worldwide.

💚 Every voice matters — please take a few minutes to participate and share this link within your networks:
👉 Take the survey here:
https://lnkd.in/grks-GB3


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