January 15, 2021January 15, 2021 Paramedical Care for XLH Patients If you or your child has a chronic disease such as X-linked hypophosphatemia (XLH) you may benefit from paramedical treatments. Following is a look ... Read more
January 13, 2021January 13, 2021 NORD Seeks Speakers for 2021 Virtual ‘Living Rare, Living Stronger’ Forum The National Organization for Rare Disorders (NORD) is seeking individuals willing to share real-life experiences with rare diseases to speak at its upcoming virtual ... Read more
January 12, 2021January 12, 2021 FAQs About Hemiepiphysiodesis for XLH Hemiepiphysiodesis or guided growth is a surgical technique used to gradually correct angular deformities, such as bow legs, in the still-growing bones of children ... Read more
January 6, 2021January 6, 2021 3 New PHEX Gene Mutations Found in Polish Children With XLH Three new mutations in the PHEX gene — which provides instructions for making an enzyme primarily active in the bones and teeth — were ... Read more
December 18, 2020December 18, 2020 EURORDIS Award Contest Welcomes Photos of Life With Rare Disease The annual EURORDIS Photo Award contest is inviting people worldwide to visually express what life is like with a rare disease, while raising awareness ... Read more
Health Insights Recreational Therapy for XLH Patients December 18, 2020December 18, 2020 Living with a chronic disorder such as X-linked hypophosphatemia (XLH) can lead to anxiety, ...
Health Insights 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 ...
News Vitamin D Supplements Could Have Potential as XLH Therapy, Mouse Study Shows December 9, 2020December 9, 2020 Vitamin D dietary supplements can promote bone mineralization without changing phosphate levels or causing ...
FAQs FAQs About Crysvita for XLH December 4, 2020December 4, 2020 Crysvita (burosumab) is a treatment for people with X-linked hypophosphatemia (XLH) developed by Kyowa ...
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 ...
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 ...
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 ...
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) ...
Latest NORD Webinar Offers Insights on Starting Nonprofit, Patient Registry November 19, 2020November 19, 2020
Study: Recommended Crysvita Starting Dose Too Low to Manage XLH in Children November 18, 2020November 18, 2020
XLH Prevalence in Paraná, Brazil, Lower Than Elsewhere in World, Study Finds November 11, 2020November 11, 2020
XLH and Sleep November 6, 2020November 9, 2020 X-linked hypophosphatemia (XLH) is a rare genetic disorder caused by mutations in the PHEX ...
NORD Hosting ‘RareLaunch’ Workshops to Help Start Rare Disease Non-profits November 4, 2020November 6, 2020
Poor Quality of Life in XLH Adults With Oral Health Problems, Study Finds October 28, 2020October 28, 2020
UK Organization ‘Same But Different’ Announces ‘Glimmer of Hope’ Photo Contest Winner October 27, 2020October 28, 2020 A photo of a bespectacled young boy, his red baseball cap slightly askew as ...
Mouse Model May Help Test Therapies Targeting Bone, Joint Issues in XLH October 21, 2020October 21, 2020
News, syndicated Telehealth ‘Helpful’ Alternative to In-person Care, Rare Disease Patients Say October 20, 2020October 20, 2020 A majority of rare disease patients using telehealth during the COVID-19 pandemic thought the experience ...
Health Insights Independent Living for Adults With XLH October 16, 2020October 16, 2020 Living alone with a chronic disease such as X-linked hypophosphatemia (XLH) can be challenging. ...
News Diagnostic Process for Hypophosphatemic Rickets Lengthy, Report Says October 14, 2020October 14, 2020 People with hypophosphatemic rickets (HR) may experience yearslong delays in getting a confirmed diagnosis ...
Health Insights Hearing Impairment and XLH October 9, 2020October 9, 2020 Patients with X-linked hypophosphatemia (XLH) may experience hearing impairment or loss. The following information ...
News, syndicated Same But Different Asks Public to Vote on ‘Glimmer of Hope’ Calendar Photos October 8, 2020October 8, 2020 Same But Different, a nonprofit U.K. group that uses art for social change, is ...
News EU Expands Use of XLH Therapy Crysvita to Include Older Adolescents, Adults October 7, 2020October 7, 2020 The European Commission (EC) has expanded the approval of Crysvita (burosumab) to treat all ...
Health Insights Things to Ask a Genetic Counselor About XLH October 2, 2020October 2, 2020 If you are set to meet with a genetic counselor regarding an X-linked hypophosphatemia (XLH) ...
News Poorer Growth in XLH Infants Sustained Into Adolescence, Study Says September 30, 2020September 30, 2020 Children with X-linked hypophosphatemia (XLH) show a diminished growth curve as 1-year-olds relative to ...
News, syndicated Efforts Continue Beyond Awareness Month to Expand Newborn Screening Panels in US September 30, 2020September 30, 2020 It took one year for Dona Krystosek to get a diagnosis for her son, ...
