Updates

July 31, 2020July 31, 2020
About BeyondXLH

If you or your child have X-linked hypophosphatemia (XLH), you might want to consider enrolling in the online disease-monitoring program BeyondXLH. Because XLH is ... Read more
July 27, 2020July 27, 2020
Crysvita Approval Urged in EU for Older Adolescents, Adults With XLH

The Committee for Medicinal Products for Human Use (CHMP), an arm of the European Medicines Agency, has recommended that the approval of Crysvita (burosumab) be expanded to ... Read more
July 23, 2020July 23, 2020
Thorough Analyses Needed to Prevent Misdiagnosis of XLH Patients, Case Study Asserts

Complete clinical and genetic analyses are needed to correctly diagnose X-linked hypophosphatemia (XLH), according to the case study of a woman whose disease was misdiagnosed ... Read more
July 17, 2020July 17, 2020
Traveling When You Have XLH: Dos and Don’ts

If you have a rare disease like X-linked hypophosphatemia (XLH), traveling safely can be challenging. Here are a few tips to get you started ... Read more
July 16, 2020July 16, 2020
Safer, More Effective Therapies Needed for Hypophosphatemic Rickets, Turkish Study Reports

Higher doses of phosphate and vitamin D supplements seem to reduce bone deformities in young people with hypophosphatemic rickets (HR), a Turkish nationwide study ... Read more

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Updates

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

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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

Spoon Theory for XLH Caregivers

Adults with XLH Have Greater Risk of Obesity, French Study Indicates

Warning Signs of Depression in People with XLH

COVID-19 Delaying Rare Disease and Gene Therapy Trials, Pharma Execs Say

Crysvita Treatment for Nearly 2 Years Continues to be Safe for XLH Patients, Trial Data Show

Eurordis Urges Expansion of Newborn Screening Initiatives Across Europe

New PHEX Gene Mutations Alter Protein Location, But Don’t Aggravate XLH, Study Finds

Unity and EU-wide Efforts Focus of Online Rare Disease Meeting

Tips for Staying Motivated with a Chronic Disease Like XLH

New Surgery Technique May Correct Severe Bowed Legs in XLH Patients, Case Study Shows

Rare Diseases Clinical Research Network Opens Online Survey on COVID-19

How to Deal with Pseudofractures in XLH

New PHEX Mutation Causing XLH Found in Japanese Family

NORD Webinar Outlines COVID-19 Response on Financial, Policy Fronts

Industry leaders seek to advance innovative resources for rare and orphan disease communities amid COVID-19 outbreak

Surge in Telemedicine One ‘Good’ Outcome from COVID-19 Crisis, Doctors Say

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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

Subscribe to our mailing list

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

Spoon Theory for XLH Caregivers

Adults with XLH Have Greater Risk of Obesity, French Study Indicates

Warning Signs of Depression in People with XLH

COVID-19 Delaying Rare Disease and Gene Therapy Trials, Pharma Execs Say

Crysvita Treatment for Nearly 2 Years Continues to be Safe for XLH Patients, Trial Data Show

Eurordis Urges Expansion of Newborn Screening Initiatives Across Europe

Video Games Connect Chronically Ill Children Isolated at Home, Hospital

New PHEX Gene Mutations Alter Protein Location, But Don’t Aggravate XLH, Study Finds

Unity and EU-wide Efforts Focus of Online Rare Disease Meeting

Tips for Staying Motivated with a Chronic Disease Like XLH

New Surgery Technique May Correct Severe Bowed Legs in XLH Patients, Case Study Shows

Rare Diseases Clinical Research Network Opens Online Survey on COVID-19

How to Deal with Pseudofractures in XLH

New PHEX Mutation Causing XLH Found in Japanese Family

NORD Webinar Outlines COVID-19 Response on Financial, Policy Fronts

Industry leaders seek to advance innovative resources for rare and orphan disease communities amid COVID-19 outbreak

Surge in Telemedicine One ‘Good’ Outcome from COVID-19 Crisis, Doctors Say

Pin It on Pinterest