Posts by: Mary Chapman

News, syndicated

Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 on Feb. 28. The activities are focused on heightening awareness about rare diseases and the ... Read more

February 5, 2021February 5, 2021

Your Multidisciplinary XLH Treatment Team

Health Insights

Given the disparate symptoms that can occur in X-linked hypophosphatemia (XLH) — including bone abnormalities, muscle weakness, and pain — it’s important to coordinate between a multidisciplinary team of physicians ... Read more

February 4, 2021February 4, 2021

NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns

News, syndicated

While progress was made last year on newborn screening and other policy issues critical to rare disease patients, a “State Report Card” argues that many concerns — notably out-of-pocket costs ... Read more

January 29, 2021January 29, 2021

Myths and Facts About XLH

Health Insights

Like most rare conditions, X-linked hypophosphatemia (XLH) is a complicated disorder that many people may not fully understand. There are both myths and facts about the progressive, inherited disease. Here, ... Read more

January 22, 2021January 22, 2021

Respite Care for Families Affected by XLH

Health Insights

Providing constant care to a person who has X-linked hypophosphatemia (XLH) can be depleting emotionally, mentally and physically. Sooner or later, you must replenish your reserves. Respite care for families affected ... Read more

January 21, 2021January 21, 2021

NORD’s Caregiver Respite Program Continues Through Pandemic

News, syndicated

Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet that need, the National Organization for ... Read more

January 15, 2021January 15, 2021

Paramedical Care for XLH Patients

Health Insights

If you or your child has a chronic disease such as X-linked hypophosphatemia (XLH) you may benefit from paramedical treatments. Following is a look at some of the ways such ... Read more

January 13, 2021January 13, 2021

NORD Seeks Speakers for 2021 Virtual ‘Living Rare, Living Stronger’ Forum

News, syndicated

The National Organization for Rare Disorders (NORD) is seeking individuals willing to share real-life experiences with rare diseases to speak at its upcoming virtual Living Rare, Living Stronger NORD Patient ... Read more

January 12, 2021January 12, 2021

FAQs About Hemiepiphysiodesis for XLH

FAQs

Hemiepiphysiodesis or guided growth is a surgical technique used to gradually correct angular deformities, such as bow legs, in the still-growing bones of children with X-linked hypophosphatemia (XLH). During a ... Read more

December 18, 2020December 18, 2020

EURORDIS Award Contest Welcomes Photos of Life With Rare Disease

News, syndicated

The annual EURORDIS Photo Award contest is inviting people worldwide to visually express what life is like with a rare disease, while raising awareness through their work of these disorders. ... Read more