February 24, 2021August 24, 2022 Study Finds Poor Mineralization in Teeth of XLH Children The teeth of children with X-linked hypophosphatemia (XLH) are marked by defects in mineralization affecting the ... Read more
February 19, 2021February 19, 2021 XLH and Advocacy Health advocacy — that of patients, families, friends, caregivers, and supporters — can help to improve ... Read more
February 18, 2021February 18, 2021 Eurordis Survey: Healthcare Experience Worse for Rare Disease Patients People with rare disorders have a worse healthcare experience than those affected by chronic diseases, according ... Read more
February 17, 2021February 17, 2021 Trial Will Test Calcitriol on Bone Health; Now Recruiting in Boston A Phase 1 trial is enrolling children and adults with X‐linked hypophosphatemia (XLH) to assess the ... Read more
February 12, 2021February 12, 2021 XLH and the Kidneys X-linked hypophosphatemia (XLH), which results from a loss of phosphate from the kidneys, is known to ... Read more
News, syndicated Pandemic Won’t Stop Rare Disease Day on Feb. 28 February 10, 2021February 11, 2021 Scores of virtual events are afoot ...
Health Insights Your Multidisciplinary XLH Treatment Team February 5, 2021February 5, 2021 Given the disparate symptoms that can ...
News, syndicated NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns February 4, 2021February 4, 2021 While progress was made last year ...
News Case Study Stresses Importance of Early Diagnosis, Awareness February 3, 2021February 3, 2021 The case of a woman diagnosed ...
Health Insights Myths and Facts About XLH January 29, 2021January 29, 2021 Like most rare conditions, X-linked hypophosphatemia ...
News Crysvita Effective at Easing Children’s Pain and Aiding Life Quality, Trial Shows January 27, 2021January 27, 2021 Switching from conventional therapy to Crysvita ...
COVID-19 Vaccines Pose Little Risk to Rare Disease Patients, FDA, CDC Say January 26, 2021January 26, 2021 The two COVID-19 vaccines that recently ...
Respite Care for Families Affected by XLH January 22, 2021January 22, 2021 Providing constant care to a person ...
NORD Seeks Speakers for 2021 Virtual ‘Living Rare, Living Stronger’ Forum January 13, 2021January 13, 2021
FAQs About Hemiepiphysiodesis for XLH January 12, 2021January 12, 2021 Hemiepiphysiodesis or guided growth is a ...
Sleep Hygiene for XLH Patients December 11, 2020December 11, 2020 Patients with X-linked hypophosphatemia (XLH) may ...
Vitamin D Supplements Could Have Potential as XLH Therapy, Mouse Study Shows December 9, 2020December 9, 2020
News, syndicated NORD Push for Rare Disease Advisory Councils Focus of Dec. 16 Public Meeting December 3, 2020December 3, 2020 To empower and equip members of ...
News Parathyroid Status Affects Kidney Phosphate Reabsorption, Study Indicates December 2, 2020December 2, 2020 Abnormal activity of the parathyroid glands ...
News, syndicated Survey Finds COVID-19 Disrupted Care, Well-Being of Rare Disease Patients in Europe November 26, 2020November 26, 2020 The first wave of COVID-19 in Europe ...
News New Genetic Sequencing Panel Could Help Diagnose XLH, Related Conditions November 25, 2020November 25, 2020 A new genetic sequencing panel could ...
News, syndicated Latest NORD Webinar Offers Insights on Starting Nonprofit, Patient Registry November 19, 2020November 19, 2020 Leaders in the U.S. rare disease ...
News Study: Recommended Crysvita Starting Dose Too Low to Manage XLH in Children November 18, 2020November 18, 2020 The recommended starting dose of Crysvita ...
Health Insights The International XLH Registry November 13, 2020November 13, 2020 If you or your child received ...
News XLH Prevalence in Paraná, Brazil, Lower Than Elsewhere in World, Study Finds November 11, 2020November 11, 2020 The prevalence of X-linked hypophosphatemia (XLH) ...
Health Insights XLH and Sleep November 6, 2020November 9, 2020 X-linked hypophosphatemia (XLH) is a rare ...
