News

November 18, 2020November 18, 2020

Study: Recommended Crysvita Starting Dose Too Low to Manage XLH in Children

News

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 Swedish study indicates. That dose, ... Read more

November 11, 2020November 11, 2020

XLH Prevalence in Paraná, Brazil, Lower Than Elsewhere in World, Study Finds

News

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 million inhabitants, according to a ... Read more

November 4, 2020November 6, 2020

NORD Hosting ‘RareLaunch’ Workshops to Help Start Rare Disease Non-profits

News, syndicated

The National Organization for Rare Disorders (NORD)’s RareLaunch training program will host two days of free virtual workshops in December, with the aim of empowering leaders to start non-profit ... Read more

October 28, 2020October 28, 2020

Poor Quality of Life in XLH Adults With Oral Health Problems, Study Finds

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Oral health problems lead to functional limitations, pain, disability and psychological discomfort in adults with X-linked hypophosphatemia (XLH), a study has found. A multidisciplinary approach with regular dental examinations to identify early ... Read more

October 27, 2020October 28, 2020

UK Organization ‘Same But Different’ Announces ‘Glimmer of Hope’ Photo Contest Winner

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A photo of a bespectacled young boy, his red baseball cap slightly askew as he enjoys time outside, will be featured on the front cover of an upcoming calendar ... Read more

October 21, 2020October 21, 2020

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

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A mouse model of X-linked hypophosphatemia (XLH) that mimics the skeletal alterations seen in human patients may be a valuable tool to test new therapies that aim to prevent ... Read more

October 20, 2020October 20, 2020

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

News, syndicated

A majority of rare disease patients using telehealth during the COVID-19 pandemic thought the experience positive, and many would like the option of continuing its use in future appointments, a ... Read more

October 14, 2020October 14, 2020

Diagnostic Process for Hypophosphatemic Rickets Lengthy, Report Says

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People with hypophosphatemic rickets (HR) may experience yearslong delays in getting a confirmed diagnosis of their condition, undergoing a multitude of clinical visits and evaluations, according to a report ... Read more

October 8, 2020October 8, 2020

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

News, syndicated

Same But Different, a nonprofit U.K. group that uses art for social change, is inviting people to choose their favorite photographs in a calendar contest to heighten awareness of rare ... Read more

October 7, 2020October 7, 2020

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

News

The European Commission (EC) has expanded the approval of Crysvita (burosumab) to treat all adolescents and adults with X-linked hypophosphatemia (XLH). The decision follows a recommendation by the Committee for ... Read more