News

July 10, 2020July 10, 2020

National Survey Seeks to Assess Full Social, Economic Burdens of Rare Diseases in US

News, syndicated

The EveryLife Foundation for Rare Diseases has launched a nationwide National Burden of Rare Disease Survey to measure the full implications, economic and social, of living with rare disease ... Read more

July 9, 2020July 9, 2020

Ankle Pain in XLH Adults May Indicate Inflammation, Case Study Says

News

X-linked hypophosphatemia (XLH) can cause inflammation of ligaments, tendons, or joint capsules where they attach to bone — a condition called enthesopathy — and result in ankle pain, a ... Read more

July 2, 2020July 2, 2020

Study Suggests Ultrasound Technique as Radiation-free Way to Monitor Bone Health

News

A recent ultrasound technique, called bi-directional axial transmission (BDAT), is a radiation-free way to help evaluate bone health and monitor treatment response in people with X-linked hypophosphatemia (XLH), a ... Read more

June 25, 2020June 25, 2020

New XLH-causing Gene Mutation Found in Chinese Family, Case Report Suggests

News

A Chinese man and members of his family carry a previously unknown mutation that caused X-linked hypophosphatemia (XLH), according to a recently published case report. The study, “A novel ... Read more

June 22, 2020June 22, 2020

Alexion Charitable Foundation Giving $1.1M to Assist Rare Disease Community During Pandemic

cystic fibrosis, News, syndicated

The Alexion Charitable Foundation has awarded $1.1 million in grants to programs that support those with rare diseases during the COVID-19 pandemic, the organization recently announced. The grants will ... Read more

June 18, 2020June 18, 2020

Top Research Priorities for Rare Musculoskeletal Diseases Identified in Survey

News

Better understanding of disease progression during adulthood and identifying effective treatments and symptom management approaches are top research priorities for X-linked hypophosphatemia (XLH) and other rare musculoskeletal disorders that ... Read more

June 11, 2020June 11, 2020

Adults With XLH Report Lack of Credence by Healthcare Providers

News

Adults with X-linked hypophosphatemia (XLH) report experiences of chronic pain, fear of falling, and lack of credence given by healthcare providers. To counterbalance these obstacles, patients use resilience, tenacity ... Read more

June 9, 2020June 10, 2020

Coalition Will Address Racial Disparities in Rare Disease Communities

News

The Black Women’s Health Imperative (BWHI) recently created a Rare Disease Diversity Coalition focused on reducing racial disparities in the rare disease community. Getting a timely and accurate diagnosis ... Read more

June 4, 2020June 4, 2020

Adults with XLH Have Greater Risk of Obesity, French Study Indicates

News

Adults with X-linked hypophosphatemia (XLH), especially those younger than 45, have an increased likelihood of excess weight and obesity compared to the general population in France, a study found. ... Read more

May 28, 2020May 28, 2020

COVID-19 Delaying Rare Disease and Gene Therapy Trials, Pharma Execs Say

News, syndicated

While the ongoing COVID-19 pandemic won’t have much of an impact on cash available for new biotech startups, it has begun to cause delays in the development of gene ... Read more

Pin It on Pinterest