Updates

July 14, 2020July 14, 2020
Tips for Managing Fatigue When You Have XLH

Patients with X-linked hypophosphatemia (XLH) commonly report symptoms of fatigue, pain and stiffness. Feeling fatigued can make work, school, and daily tasks more challenging to ... Read more
July 10, 2020July 10, 2020
National Survey Seeks to Assess Full Social, Economic Burdens of Rare Diseases in US

The EveryLife Foundation for Rare Diseases has launched a nationwide National Burden of Rare Disease Survey to measure the full implications, economic and social, ... Read more
July 9, 2020July 9, 2020
Ankle Pain in XLH Adults May Indicate Inflammation, Case Study Says

X-linked hypophosphatemia (XLH) can cause inflammation of ligaments, tendons, or joint capsules where they attach to bone — a condition called enthesopathy — and ... Read more
July 2, 2020July 2, 2020
Study Suggests Ultrasound Technique as Radiation-free Way to Monitor Bone Health

A recent ultrasound technique, called bi-directional axial transmission (BDAT), is a radiation-free way to help evaluate bone health and monitor treatment response in people ... Read more
June 26, 2020June 26, 2020
Clinical Trials for XLH

There currently is no cure for X-linked hypophosphatemia (XLH) and not many options for treating the disease’s symptoms. That’s why clinical trials are so important ... Read more

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Updates

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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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

What Is the XLH Disease Monitoring Program?

NORD Opens COVID-19 Financial Aid Program for Rare Disease Community

Case Report Describes Novel PHEX Mutation Causing XLH in Korean Boy

Individualized Education Program for Children with XLH

Early XLH Identification, Treatment Crucial to Keeping Quality of Life

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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

Subscribe to our mailing list

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

What Is the XLH Disease Monitoring Program?

NORD Opens COVID-19 Financial Aid Program for Rare Disease Community

Case Report Describes Novel PHEX Mutation Causing XLH in Korean Boy

Individualized Education Program for Children with XLH

Early XLH Identification, Treatment Crucial to Keeping Quality of Life

Pin It on Pinterest