News

September 16, 2020September 16, 2020

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

News

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

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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

September 3, 2020September 3, 2020

IOF $1K Awards Focus on XLH, Other Rare Skeletal Diseases

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The International Osteoporosis Foundation (IOF) has given its first five Skeletal Rare Diseases Academy Awards to researchers working on rare bone disorders, including X‐linked hypophosphatemia (XLH). Selected by a ... Read more

September 2, 2020September 2, 2020

Same But Different Photo Contest Celebrates People With Rare Diseases

News, syndicated

Same But Different, a U.K. nonprofit that uses the arts to bring communities together, is holding a calendar photography competition to raise awareness for rare diseases. Under the theme ... Read more

August 27, 2020August 27, 2020

IOF’s ‘Skeletal Rare Diseases Academy’ Spreads Word About Bone Disease

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The International Osteoporosis Foundation (IOF) has launched a global initiative to increase awareness and understanding of rare skeletal diseases such as X-linked hypophosphatemia (XLH). Called the IOF Skeletal Rare Diseases Academy, ... Read more

August 25, 2020August 25, 2020

Xperiome Platform Aims to Streamline Searches for Rare Diseases, Gain Patient Input

News, syndicated

Raremark, an online rare disease patient community, has launched a digital platform called Xperiome, aimed at streamlining the search for new medicines for rare disorders and incorporating more patient ... Read more

August 20, 2020August 20, 2020

BMI, Bowed Legs Correlate With Impaired Gait in XLH Children, Study Finds

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Most children with X‐linked hypophosphatemia (XLH) have complex deformities in their lower limbs that cause significant gait abnormalities, a study has found. Notably, a distinctive gait problem called “waddling ... Read more

August 17, 2020August 17, 2020

EveryLife Foundation Launches Scholarship Fund for Rare Disease Community in US

News, syndicated

The EveryLife Foundation for Rare Diseases has launched a scholarship fund in the U.S. to support individuals with rare disorders who are pursuing personal goals through training and education. ... Read more

August 13, 2020August 13, 2020

New Streaming Channel Showcases Rare Disease Films

News, syndicated

When the COVID-19 pandemic forced the postponement of a rare disease film festival originally slated for May, its organizers set out to find a new way to bring the ... Read more

August 6, 2020August 6, 2020

28 New Mutations Found in Children With XLH, Chinese Study Reports

News

A study of Chinese children with X-linked hypophosphatemia (XLH) found 28 new mutations in the PHEX gene that cause the rare and progressive inherited disorder. While uncommon genetic alterations ... Read more

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