Living with a chronic disorder such as X-linked hypophosphatemia (XLH) can lead to anxiety, stress, and feelings of isolation. Recreational therapy may help to improve your or a family member’s psychological and physical well-being. About XLH XLH is a rare genetic disease characterized by low levels of phosphate,…
To empower and equip members of the rare disease community to engage state leaders in matters of importance to patients and their families, the National Organization for Rare Disorders (NORD) has launched an initiative across the U.S. Its goal is to establish a Rare Disease Advisory Council (RDAC)…
A diagnosis of X-linked hypophosphatemia (XLH) is the start of a lifelong journey. Here is some information about this disease and what you might expect. About XLH XLH is a rare genetic disease characterized by low phosphate levels in the blood. It can lead to a number of…
A photo of a bespectacled young boy, his red baseball cap slightly askew as he enjoys time outside, will be featured on the front cover of an upcoming calendar in the “Same But Different” contest to raise awareness about rare disorders. “A Lovely Day Out in Kew Gardens,”…
The symptoms of X-linked hypophosphatemia (XLH) in adults can present real challenges to everyday life. Mindfulness is a technique that may help you manage those challenges. What is mindfulness? Mindfulness is the practice of being constantly aware of your thoughts, feelings, bodily sensations, and the surrounding environment.
Same But Different, a nonprofit U.K. group that uses art for social change, is inviting people to choose their favorite photographs in a calendar contest to heighten awareness of rare diseases, including amyotrophic lateral sclerosis (ALS). The organization’s panel of judges has pared the number of contest submissions…
If you have a doctor who is knowledgeable about X-linked hypophosphatemia (XLH), you should make the most of your visits, particularly in the weeks and months following your diagnosis. Here’s a guide that may help you start the conversation with your doctor and get answers to your…
The symptoms of X-linked hypophosphatemia (XLH), including weak bones and muscles and pain, make life challenging for both patients and their caregivers. Often adding to those difficulties is a lack of understanding from others who know little — or nothing — about this rare genetic disease. Following is…
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, the initiative was announced ahead of this year’s World Congress on Osteoporosis, Osteoarthritis and Musculoskeletal Diseases. Funded by…
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. The initial phase of the five-year, $1-million #RAREis Scholarship Fund will include 32 scholarships — each totaling $5,000 —…
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