News Mouse Model May Help Test Therapies Targeting Bone, Joint Issues in XLH

News, syndicated Telehealth ‘Helpful’ Alternative to In-person Care, Rare Disease Patients Say

News Diagnostic Process for Hypophosphatemic Rickets Lengthy, Report Says

News, syndicated Same But Different Asks Public to Vote on ‘Glimmer of Hope’ Calendar Photos

News EU Expands Use of XLH Therapy Crysvita to Include Older Adolescents, Adults

News Poorer Growth in XLH Infants Sustained Into Adolescence, Study Says

News, syndicated Efforts Continue Beyond Awareness Month to Expand Newborn Screening Panels in US

News Newly Identified Mutation Linked to XLH in Young Girl

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

News Key Topics on the Agenda for Virtual XLH Week

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

News, syndicated Same But Different Photo Contest Celebrates People With Rare Diseases

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

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

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

News, syndicated EveryLife Foundation Launches Scholarship Fund for Rare Disease Community in US

News, syndicated New Streaming Channel Showcases Rare Disease Films

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

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

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

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

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

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

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

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

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

News Top Research Priorities for Rare Musculoskeletal Diseases Identified in Survey

News Adults With XLH Report Lack of Credence by Healthcare Providers

News Coalition Will Address Racial Disparities in Rare Disease Communities

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

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

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

News, syndicated Eurordis Urges Expansion of Newborn Screening Initiatives Across Europe

cystic fibrosis, News, syndicated Video Games Connect Chronically Ill Children Isolated at Home, Hospital

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

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

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

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

News New PHEX Mutation Causing XLH Found in Japanese Family

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

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

News Case Report Describes Novel PHEX Mutation Causing XLH in Korean Boy

News Early XLH Identification, Treatment Crucial to Keeping Quality of Life

News Ultragenyx Assures Uninterrupted Supply of Crysvita During COVID-19 Pandemic

News NORD’s Advice on COVID-19: You’re Stronger Than You Think

News NORD Partners with ‘Sing Me a Story’ for July 18–20 Living Rare Forum

News XLH Symptoms Significantly Affect Well-being of Patients, Study Finds

News Global Rare Disease Group’s Focus: 1,000 New Therapies by 2027, Despite COVID-19

News Crysvita Normalizes Phosphate Levels, Improves Growth in Children in Real-world Study

News Study Finds Hyperparathyroidism in 25% of XLH Patients

News Pediatric Rare Disease Therapies Increase, But Most Repurposed, Study Finds

News Video: BioNews’ Social Media Campaign Highlights #WhatMakesMeRare

News Study Reports 1st XLH Case Due to Mutations in PHEX, NPR2 Genes

News Elsevier Opens Books, Review Articles to Rare Disease Researchers Starting Feb. 29

News Advice on Starting Nonprofit Groups for Rare and Other Diseases Focus of NORD Webinar

News Patients, Supporters Worldwide Recognizing Rare Disease Day 2020

News Adults With XLH Would Benefit From More Comprehensive Care, Study Says

News Mouse Study Provides Quantitative Insight on Dental Defects in XLH

News FDA Efforts to Bring Patients into Treatment Decisions Focus of NORD Webinar

News With Post-Brexit Move to Amsterdam Complete, EMA Renews Rare Disease Focus

News Treatment Strategy for XLH Changing with Recent Introduction of Crysvita, Study Reports

News Study Finds Rare Mutation Linked to Mild XLH Disease That Affects Mainly Girls

News A Third of Youngsters with XLH are Overweight or Obese, Study Finds

News Symptoms and Treatment Burden of XLH Changes Throughout Life, Study Reports

News Combo Therapy with Growth Hormone Could Improve Bone Development in XLH, Mouse Study Suggests

News Crysvita Restores Phosphate Balance, Improves Bone Health in Adults With XLH, Phase 3 Trial Shows

News HHS Secretary Alex Azar Touts White House Efforts to Cure Rare Diseases

News Antibody Against Sclerostin Protein Improves Bone Health in Mice with XLH, Study Finds

News Rising Rate of XLH Seen in UK Since 1995, Possibly Due to Better Testing, Study Says

News Most XLH Patients Develop Hard-to-treat Hyperparathyroidism as Side Effect of Standard Therapy, Study Reports

News Rare Disease Film Festival Highlights Patient and Researcher Unity

News Extended Crysvita Use Helps Keep Phosphate Levels Normal and Heal Fractures in Adults with XLH, Trial Data Show

News FDA Approves XLH Treatment with Crysvita for Patients 6 Months and Older