Mary Chapman, Features Writer —

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 hundreds of millions of individuals they are thought to affect. Patients, caregivers, and advocates worldwide will sport denim ribbons…

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 and other specialists to ensure that you or your child get optimal care. XLH is a rare…

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 for prescription medicines and access to affordable comprehensive care — still need attention. Those were the findings of the…

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, we help you separate the myths and the facts and learn more about XLH. XLH is a childhood…

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 by XLH is an opportunity to rest, relax and recharge. About XLH XLH is a rare genetic disease characterized by…

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 Rare Disorders (NORD)’s Rare Caregiver Respite Program may be a helpful resource. The program seeks to give a…

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 treatments are used to help manage this rare disorder. What is paramedical treatment? Paramedical treatments are services provided…

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 and Family Forum. The interactive, patient-focused forum will be held online June 26-27. The deadline to apply for…

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 minimally invasive procedure, surgeons apply a plate to a crooked bone, allowing it to straighten as the child…

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. Submissions for next year’s awards are open until Jan. 31. The competition is organized by France-based EURODIS, an alliance…