Updates

September 18, 2020September 18, 2020
Reproductive Options for People With XLH

If you and/or your partner have X-linked hypophosphatemia (XLH), you may worry about the potential risks involved with pregnancy or that you will pass ... Read more
September 16, 2020September 16, 2020
Real-world Data Support Effectiveness of Crysvita in Youngsters With XLH

One-year treatment with Crysvita (burosumab) reduced bone damage and increased phosphate levels in children and adolescents with X-linked hypophosphatemia (XLH), a study showed. The ... Read more
September 10, 2020September 10, 2020
Key Topics on the Agenda for Virtual XLH Week

The Virtual XLH Week 2020, a series of online events bringing together people with X-linked hypophosphatemia (XLH), their families, caregivers, and healthcare professionals, is open for ... Read more
September 10, 2020September 11, 2020
Preimplantation Genetic Diagnosis (PGD) for XLH

If you have a rare genetic disease such as X-linked hypophosphatemia (XLH), the thought of having children with a similar disorder may be stressful. ... Read more
September 5, 2020September 5, 2020
Raising Awareness About XLH

The symptoms of X-linked hypophosphatemia (XLH), including weak bones and muscles and pain, make life challenging for both patients and their caregivers. Often adding ... Read more

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Updates

Reproductive Options for People With XLH

Real-world Data Support Effectiveness of Crysvita in Youngsters With XLH

Key Topics on the Agenda for Virtual XLH Week

Preimplantation Genetic Diagnosis (PGD) for XLH

Raising Awareness About XLH

IOF $1K Awards Focus on XLH, Other Rare Skeletal Diseases

Same But Different Photo Contest Celebrates People With Rare Diseases

Will I Pass XLH to My Children?

IOF’s ‘Skeletal Rare Diseases Academy’ Spreads Word About Bone Disease

Xperiome Platform Aims to Streamline Searches for Rare Diseases, Gain Patient Input

Prenatal Genetic Diagnosis for XLH

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BMI, Bowed Legs Correlate With Impaired Gait in XLH Children, Study Finds

EveryLife Foundation Launches Scholarship Fund for Rare Disease Community in US

XLH and Pregnancy

New Streaming Channel Showcases Rare Disease Films

Genetic Testing for XLH

28 New Mutations Found in Children With XLH, Chinese Study Reports

About BeyondXLH

Crysvita Approval Urged in EU for Older Adolescents, Adults With XLH

Thorough Analyses Needed to Prevent Misdiagnosis of XLH Patients, Case Study Asserts

Traveling When You Have XLH: Dos and Don’ts

Safer, More Effective Therapies Needed for Hypophosphatemic Rickets, Turkish Study Reports

Tips for Managing Fatigue When You Have XLH

Ankle Pain in XLH Adults May Indicate Inflammation, Case Study Says

Study Suggests Ultrasound Technique as Radiation-free Way to Monitor Bone Health

Clinical Trials for XLH

New XLH-causing Gene Mutation Found in Chinese Family, Case Report Suggests

Alexion Charitable Foundation Giving $1.1M to Assist Rare Disease Community During Pandemic

Planning for the Future When You Have a Child With XLH

Top Research Priorities for Rare Musculoskeletal Diseases Identified in Survey

Adults With XLH Report Lack of Credence by Healthcare Providers

Coalition Will Address Racial Disparities in Rare Disease Communities

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Reproductive Options for People With XLH

Real-world Data Support Effectiveness of Crysvita in Youngsters With XLH

Key Topics on the Agenda for Virtual XLH Week

Preimplantation Genetic Diagnosis (PGD) for XLH

Raising Awareness About XLH

IOF $1K Awards Focus on XLH, Other Rare Skeletal Diseases

Same But Different Photo Contest Celebrates People With Rare Diseases

Will I Pass XLH to My Children?

IOF’s ‘Skeletal Rare Diseases Academy’ Spreads Word About Bone Disease

Xperiome Platform Aims to Streamline Searches for Rare Diseases, Gain Patient Input

Prenatal Genetic Diagnosis for XLH

Subscribe to our mailing list

BMI, Bowed Legs Correlate With Impaired Gait in XLH Children, Study Finds

EveryLife Foundation Launches Scholarship Fund for Rare Disease Community in US

XLH and Pregnancy

New Streaming Channel Showcases Rare Disease Films

Genetic Testing for XLH

28 New Mutations Found in Children With XLH, Chinese Study Reports

About BeyondXLH

Crysvita Approval Urged in EU for Older Adolescents, Adults With XLH

Thorough Analyses Needed to Prevent Misdiagnosis of XLH Patients, Case Study Asserts

Traveling When You Have XLH: Dos and Don’ts

Safer, More Effective Therapies Needed for Hypophosphatemic Rickets, Turkish Study Reports

Tips for Managing Fatigue When You Have XLH

National Survey Seeks to Assess Full Social, Economic Burdens of Rare Diseases in US

Ankle Pain in XLH Adults May Indicate Inflammation, Case Study Says

Study Suggests Ultrasound Technique as Radiation-free Way to Monitor Bone Health

Clinical Trials for XLH

New XLH-causing Gene Mutation Found in Chinese Family, Case Report Suggests

Alexion Charitable Foundation Giving $1.1M to Assist Rare Disease Community During Pandemic

Planning for the Future When You Have a Child With XLH

Top Research Priorities for Rare Musculoskeletal Diseases Identified in Survey

Adults With XLH Report Lack of Credence by Healthcare Providers

Coalition Will Address Racial Disparities in Rare Disease Communities

Pin It on Pinterest