Living with a chronic disorder such as Fabry disease can lead to anxiety, stress, and feelings of isolation. Recreational therapy may help to improve your psychological and physical well-being. About Fabry disease Fabry disease is a progressive rare genetic disease that results from the abnormal buildup of a type…
People with Fabry disease frequently experience sleep problems. Because a good night’s sleep is essential to physical and mental health, as well as your quality of life, it may be beneficial for you to practice sleep hygiene. About Fabry disease and sleep disturbances Researchers don’t understand exactly how Fabry disease causes…
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)…
While not a classic symptom of Fabry disease, chronic fatigue is common among patients. But there are steps you can take to boost your energy and combat fatigue. About Fabry disease Fabry disease is a rare genetic lysosomal storage disorder characterized by an impaired ability to…
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,”…
Chiesi Global Rare Diseases has launched a campaign called “Rethink Fabry” that seeks to help people with the rare genetic disorder, along with their caregivers and family members, to make informed healthcare decisions. The Italian pharmaceutical’s “disease education program,” currently intended for U.S. residents only, also includes new…
The American Kidney Fund (AKF) has opened a Fabry disease education and awareness campaign that encourages people with chronic kidney disease (CKD) who don’t know the underlying cause of their disorder to get tested for Fabry. The effort is in partnership with Sanofi Genzyme, and expands on…
Having a chronic condition such as Fabry disease can be particularly concerning if you are living alone. However, there are steps you can take to help you live well and independently. Get educated With a chronic disease, you are in a different place than someone with an acute illness. You…
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…
Research has shown that newborn screening can effectively detect Fabry disease in infants. Still, more efforts are necessary to expand such screening in the U.S. and elsewhere. You may find the following information useful as you learn more about newborn screening for Fabry disease. What is Fabry disease? Fabry disease…
Get regular updates to your inbox.