Mary Chapman, Features Writer —

If you or your child have X-linked hypophosphatemia (XLH), you might want to consider enrolling in the online disease-monitoring program BeyondXLH. Because XLH is so rare, and its symptoms can vary greatly, it’s difficult to predict how the disease will progress, and what treatments will be best…

There currently is no cure for X-linked hypophosphatemia (XLH) and not many options for treating the disease’s symptoms. That’s why clinical trials are so important as scientists work to develop new and better therapies. What are clinical trials? Clinical trials are at the heart of all medical advances.

Caring for a child with X-linked hypophosphatemia (XLH) can be overwhelming. Worrying about what might happen if your child outlives you, or you become disabled, can be stressful. Here are some suggestions to help you start to plan for the future. Create a plan for the future Thinking about…

Caring for a child who has X-linked hypophosphatemia (XLH) can be draining. You’re dealing with a rare disease characterized by weakened bones and teeth, possible fractures and dental abscesses, muscle weakness and pain. Having to constantly try to explain what you’re going through to friends and associates can…

When you’re living with a rare and progressive disorder like X-linked hypophosphatemia (XLH), with its myriad of potential symptoms, you may find it difficult to stay motivated. Here are some tips that may help spur you on. Stick to when you’re most productive To have a productive day, you…

The Rare Diseases Clinical Research Network (RDCRN) has opened an online survey to better understand how the COVID-19 outbreak is affecting people with rare diseases, their families, and caregivers. Survey questions cover a patient’s physical and mental health, supply of treatments, and access to healthcare, among other…

The National Organization for Rare Disorders (NORD) has opened a financial assistance program for people in rare disease community who are affected by the COVID-19 pandemic in the U.S. Called the NORD COVID-19 Critical Relief Program, the effort will provide up to $1,000 annually to those eligible to…

X-linked hypophosphatemia (XLH) is a progressive inherited disorder that can affect children‘s proper bone development and result in fractures and other complications, including delayed growth and short stature. Your child may face difficulties at school because of his or her outward appearance. To reduce the disease’s impact…

A person who has a rare genetic disorder such as X-linked hypophosphatemia (XLH) may require frequent help from a caregiver to accomplish everyday tasks. As a caregiver, you often may be stretched to the limit meeting the needs of the patient or loved one. XLH can pose many challenges for…

Beginning on Feb. 29, Rare Disease Day, chapters from notable scientific books and clinical review articles covering rare disorders will be available free-of-charge from Elsevier. The offer runs through April 30, and aims to supports work by researchers and clinicians into a better understanding of and treatments for rare diseases, as well…