February 24, 2021February 24, 2021 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 three layers of hard dental tissue — enamel, dentin ... Read more
February 19, 2021February 19, 2021 XLH and Advocacy Health advocacy — that of patients, families, friends, caregivers, and supporters — can help to improve the accessibility and quality of care available to you ... 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 to the results of an international survey conducted by ... 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 effects of calcitriol, the active form of vitamin D, ... 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 lead to muscle weakness, muscle pain, and problems with ... 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 around the world to mark Rare Disease Day 2021 ...
Health Insights Your Multidisciplinary XLH Treatment Team February 5, 2021February 5, 2021 Given the disparate symptoms that can occur in X-linked hypophosphatemia (XLH) — including bone abnormalities, ...
News, syndicated NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns February 4, 2021February 4, 2021 While progress was made last year on newborn screening and other policy issues critical to ...
News Case Study Stresses Importance of Early Diagnosis, Awareness February 3, 2021February 3, 2021 The case of a woman diagnosed with X-linked hypophosphatemia (XLH) relatively late in life — ...
Health Insights Myths and Facts About XLH January 29, 2021January 29, 2021 Like most rare conditions, X-linked hypophosphatemia (XLH) is a complicated disorder that many people may ...
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 (burosumab) leads to clinically relevant reductions in pain and ...
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 received emergency approval from the U.S. and other worldwide ...
Respite Care for Families Affected by XLH January 22, 2021January 22, 2021 Providing constant care to a person who has X-linked hypophosphatemia (XLH) can be depleting emotionally, mentally ...
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 surgical technique used to gradually correct angular deformities, such ...
Sleep Hygiene for XLH Patients December 11, 2020December 11, 2020 Patients with X-linked hypophosphatemia (XLH) may experience sleep problems. Good quality sleep is essential to ...
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 the rare disease community to engage state leaders in ...
News Parathyroid Status Affects Kidney Phosphate Reabsorption, Study Indicates December 2, 2020December 2, 2020 Abnormal activity of the parathyroid glands can change the extent to which phosphate is reabsorbed ...
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 severely disrupted access to care and raised stress and ...
News New Genetic Sequencing Panel Could Help Diagnose XLH, Related Conditions November 25, 2020November 25, 2020 A new genetic sequencing panel could be used to help diagnose X-linked hypophosphatemia (XLH) and ...
News, syndicated Latest NORD Webinar Offers Insights on Starting Nonprofit, Patient Registry November 19, 2020November 19, 2020 Leaders in the U.S. rare disease community came together recently for a webinar to present ...
News Study: Recommended Crysvita Starting Dose Too Low to Manage XLH in Children November 18, 2020November 18, 2020 The recommended starting dose of Crysvita (burosumab) is too low to effectively manage X-linked hypophosphatemia ...
Health Insights The International XLH Registry November 13, 2020November 13, 2020 If you or your child received a diagnosis of X-linked hypophosphatemia (XLH), you may want ...
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) in the Brazilian state of Paraná is lower than ...
Health Insights XLH and Sleep November 6, 2020November 9, 2020 X-linked hypophosphatemia (XLH) is a rare genetic disorder caused by mutations in the PHEX gene ...
