WE ARE THE

INTERNATIONAL XLH ALLIANCE

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

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Press Release - For Immediate Distribution

International XLH Awareness Day - October 23

For me, best care is...

Click to download our info-graphic on the 12 recommendations

The Netherlands

The Netherlands – Nederland

Martha-rare-disease-day — Rare

Martha’s Colour

Annette Rare disease day — Rare

Annette’s Colour

Kim Rare Disease day — Rare

Kim’s Colour Copy

Fenna Rare Disease Day — Rare

Fenna’s Colour

Ainhoa rare disease day 21 — Rare

Ainhoa’s Colour

jana rare disease day — Rare

Jana’s Colour

rare-disease-day-omar — Rare

Omar’s Colour

rare-disease-day-ronja — Rare

Ronja’s Colour

Get colourful and make the world more colourful.
Grab finger paints or fluorescent makeup and paint yourselves. Use colourful LEDs as a light source and illuminate yourselves. Use the built-in photo filter (on Instagram or TikTok) and use the #Rarediseaseday filter to take photos of yourselves.

You have your photo ready to share? Then upload your photo using the button below. All photos uploaded there will be published through our social media channels and online platforms.

Submit your image today!

Our mission

By bringing together groups worldwide we amplify the patient voice of X-linked hypophosphatemia (XLH) and related disorders, to set a global multi-disciplinary standard of care and research that could not be achieved independently, to ensure that all patients’ management is the same.

MEMBERSHIP

We provide a united global voice for patients with XLH and related disorders.

When you become a member, you will join the only collective fighting x-linked hypophosphatemia and related disorders.

By becoming a member of the International XLH Alliance your charity will get many benefits of joining a group who are all working towards the same goal.

Information
Share your work with other XLH charities.

Support
Receive help in achieving your charity objectives.

Research
Help facilitate research into XLH and related disorders.

Projects
Opportunity to take part in research projects.

Communication
Be in direct contact with other XLH charities around the world.

Join Us
Contact the International XLH Alliance to enquire about becoming a member. Get In Touch