News

October 21, 2020October 21, 2020

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

News

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

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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

September 30, 2020September 30, 2020

Poorer Growth in XLH Infants Sustained Into Adolescence, Study Says

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Children with X-linked hypophosphatemia (XLH) show a diminished growth curve as 1-year-olds relative to healthy toddlers, and their relative rate of growth progressively diminishes through early adolescence, a study ... Read more

September 30, 2020September 30, 2020

Efforts Continue Beyond Awareness Month to Expand Newborn Screening Panels in US

News, syndicated

It took one year for Dona Krystosek to get a diagnosis for her son, Levi, after he was born. The family received three misdiagnoses of fatal diseases until they ... Read more

September 23, 2020September 23, 2020

Newly Identified Mutation Linked to XLH in Young Girl

News

A newly identified mutation is the probable cause of X-linked hypophosphatemia (XLH) in a young girl, according to recent case report. The study, “X-linked hypophosphatemic rickets: a new mutation,” ... Read more

September 16, 2020September 16, 2020

Real-world Data Support Effectiveness of Crysvita in Youngsters With XLH

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One-year treatment with Crysvita (burosumab) reduced bone damage and increased phosphate levels in children and adolescents with X-linked hypophosphatemia (XLH), a study showed. The study, “Real-life clinical study: 1-year ... Read more

September 10, 2020September 10, 2020

Key Topics on the Agenda for Virtual XLH Week

News

The Virtual XLH Week 2020, a series of online events bringing together people with X-linked hypophosphatemia (XLH), their families, caregivers, and healthcare professionals, is open for registration. Organized by the XLH ... Read more

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