Prader-Willi syndrome (PWS) is a genetic condition that affects growth and development. In this article, genetic counselor Elizabeth Kearney answers common questions for individuals with Prader-Willi Syndrome and their caregivers.
Read MoreThis curated collection by a mom to a child with rare disease can serve as both strength and guidance while navigating rare disease and its tribulations.
Read MoreCoping with rare genetic disease is a journey. Along the way, questions may arise about inheritance and genetic testing. Genetic counselors are specially trained healthcare professionals who can provide personalized advice and support.
Read MoreRare patients can run into trouble accessing treatments for any of a number of reasons. Perhaps the medication your doctor would like to try is not yet FDA-approved for your condition. There might be a clinical trial you want to take part in, but you do not meet the eligibility requirements for that trial. Or maybe your health insurer is reluctant to pay for a newly available medication. Whatever the reason, there are programs that may offer hope.
Read MoreAdaptive clothing is clothing created to solve problems. Makers of adaptive clothing specialize in apparel, footwear, and accessories designed to make life easier for those with mobility issues and other special health needs. All aim to improve comfort and accessibility, promote independence and dignity, and make wearers look good and feel good.
Read MoreMyasthenia Gravis (MG) is an autoimmune disease in which the immune system produces antibodies that interfere with normal cell function, instead of attacking invaders like bacteria and viruses.
Read MorePlasmapheresis is a procedure used to filter out antibodies that are mistakenly attacking the body’s own tissues. Here’s what to know about the ins and outs of the procedure.
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