November 19, 2020November 19, 2020 Latest NORD Webinar Offers Insights on Starting Nonprofit, Patient Registry Leaders in the U.S. rare disease community came together recently for a webinar to present helpful information on how to start a nonprofit and ... Read more
November 18, 2020November 18, 2020 Study: Recommended Crysvita Starting Dose Too Low to Manage XLH in Children The recommended starting dose of Crysvita (burosumab) is too low to effectively manage X-linked hypophosphatemia (XLH) in children with the rare inherited disorder, a ... Read more
November 13, 2020November 13, 2020 The International XLH Registry If you or your child received a diagnosis of X-linked hypophosphatemia (XLH), you may want to consider enrolling in the XLH Registry. The information ... Read more
November 11, 2020November 11, 2020 XLH Prevalence in Paraná, Brazil, Lower Than Elsewhere in World, Study Finds The prevalence of X-linked hypophosphatemia (XLH) in the Brazilian state of Paraná is lower than elsewhere in the world, at about five cases per ... Read more
November 6, 2020November 9, 2020 XLH and Sleep X-linked hypophosphatemia (XLH) is a rare genetic disorder caused by mutations in the PHEX gene that results in the loss of phosphate through the ... Read more
News, syndicated NORD Hosting ‘RareLaunch’ Workshops to Help Start Rare Disease Non-profits November 4, 2020November 6, 2020 The National Organization for Rare Disorders (NORD)’s RareLaunch training program will host two days ...
Health Insights Just Received an XLH Diagnosis, Now What? October 30, 2020October 30, 2020 A diagnosis of X-linked hypophosphatemia (XLH) is the start of a lifelong journey. Here ...
News Poor Quality of Life in XLH Adults With Oral Health Problems, Study Finds October 28, 2020October 28, 2020 Oral health problems lead to functional limitations, pain, disability and psychological discomfort in adults with X-linked ...
News, syndicated 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 ...
Health Insights Mindfulness for Adults With XLH October 23, 2020October 23, 2020 The symptoms of X-linked hypophosphatemia (XLH) in adults can present real challenges to everyday ...
News Mouse Model May Help Test Therapies Targeting Bone, Joint Issues in XLH October 21, 2020October 21, 2020 A mouse model of X-linked hypophosphatemia (XLH) that mimics the skeletal alterations seen in ...
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 ...
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. ...
Diagnostic Process for Hypophosphatemic Rickets Lengthy, Report Says October 14, 2020October 14, 2020
Same But Different Asks Public to Vote on ‘Glimmer of Hope’ Calendar Photos October 8, 2020October 8, 2020
EU Expands Use of XLH Therapy Crysvita to Include Older Adolescents, Adults October 7, 2020October 7, 2020
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) ...
Poorer Growth in XLH Infants Sustained Into Adolescence, Study Says September 30, 2020September 30, 2020
Efforts Continue Beyond Awareness Month to Expand Newborn Screening Panels in US September 30, 2020September 30, 2020
Newly Identified Mutation Linked to XLH in Young Girl September 23, 2020September 23, 2020 A newly identified mutation is the probable cause of X-linked hypophosphatemia (XLH) in a ...
Real-world Data Support Effectiveness of Crysvita in Youngsters With XLH September 16, 2020September 16, 2020
News Key Topics on the Agenda for Virtual XLH Week September 10, 2020September 10, 2020 The Virtual XLH Week 2020, a series of online events bringing together people with X-linked ...
Health Insights Preimplantation Genetic Diagnosis (PGD) for XLH September 10, 2020October 2, 2020 If you have a rare genetic disease such as X-linked hypophosphatemia (XLH), the thought ...
Health Insights Raising Awareness About XLH September 5, 2020September 5, 2020 The symptoms of X-linked hypophosphatemia (XLH), including weak bones and muscles and pain, make ...
News IOF $1K Awards Focus on XLH, Other Rare Skeletal Diseases September 3, 2020September 3, 2020 The International Osteoporosis Foundation (IOF) has given its first five Skeletal Rare Diseases Academy ...
News, syndicated Same But Different Photo Contest Celebrates People With Rare Diseases September 2, 2020September 2, 2020 Same But Different, a U.K. nonprofit that uses the arts to bring communities together, ...
Health Insights Will I Pass XLH to My Children? August 28, 2020August 28, 2020 If you have a rare genetic disease like X-linked hypophosphatemia (XLH), and are considering ...
News IOF’s ‘Skeletal Rare Diseases Academy’ Spreads Word About Bone Disease August 27, 2020August 27, 2020 The International Osteoporosis Foundation (IOF) has launched a global initiative to increase awareness and ...
News, syndicated Xperiome Platform Aims to Streamline Searches for Rare Diseases, Gain Patient Input August 25, 2020August 25, 2020 Raremark, an online rare disease patient community, has launched a digital platform called Xperiome, ...
Health Insights Prenatal Genetic Diagnosis for XLH August 21, 2020August 21, 2020 If you have a family history of X-linked hypophosphatemia (XLH) and are planning to ...
