If you're looking for a time table for adjusting to, and accepting, the diagnosis of a rare disease, you won't find one, because there isn't one. The variety of rare…
Duchenne muscular dystrophy (DMD) is a heartbreaker for the the 250,000 families worldwide whose sons are born with this debilitating, progressive disease. It is rare, and yet the ripples of its…
Cancer. This word can inspire fear in even the most stalwart of individuals. How many other diseases are known by a phrase involving just the first letter? The Big C.…
The first Disorder: The Rare Disease Film Festival (RDFF) is coming to Boston, MA this October! Check out details below: Who: Rare Outreach Coalition, LLC. What: Disorder: The Rare Disease Film…
At 54 years of age, Kathleen was healthy and physically fit. She knew about her grandfather’s death at the age of 30 to a heart attack. She also knew about…
Happy Back-to-School Week Patient Worthians! If you're going back to school or your children are going back to school, we know it's a hectic and fun time of year. So…
When I was a kid, pedal power was the way to go. In fact, it was the only way to go—anywhere. It was a mode of transportation for us. We…
In recognition of Spinal Muscular Atrophy Awareness Month, Joe Akmakjian, an SMA warrior/blogger, is promoting a unique understanding of his rare disedsase. Originally published on the Muscular Dystrophy Association's Strongly…
Britain may be making its Brexit, but people with rare diseases may want to keep a close eye on the European Union (EU) and its newly formed European Reference Networks (ERNs).…
Mended Hearts is a nonprofit group that helps bring hope to heart disease patients, caregivers and families. In Alabama specifically, the local Mended Hearts group had not been active for…
One night in March 2016,13-year-old Treyvon Summers experienced extreme pain that woke him up out his sleep. This was the start of him losing his mobility in both his legs.…
Whenever I feel the stress of life getting to me, I hop over to YouTube and search “random acts of kindness” or “heartwarming acts.” Some of the results? The police…
Sickle cell disease, hemophilia, and thalassemia are a few of the inherited blood disorders. Dr. Waveney Charles is a hematologist, or specialist in blood-related conditions. She believes that the number…
In my home, everything is shared with our dogs. When eggs are made for breakfast, the dog’s eggs are served scrambled. When it’s time to exercise, we all head outside…
Loooong before myasthenia gravis (MG) came into the picture, Cathie’s mom used to joke that Cathie must be part fish. She was always in the water. It started with swimming…
Among the many uses of social media, medical diagnosis for rare diseases, for everything from acromegaly to Zellweger spectrum syndromes, may not be the first that comes to mind. But…
A recent survey of more than 150 idiopathic pulmonary fibrosis (IPF) patients demonstrates the invisible burden the rare disease causes. It is no secret that any rare disease has the…
According to an online article from PRI, there is a terrible injustice being meted out to people with albinism in Tanzania. Upon birth, their limbs have price tags on them,…
When I was in second grade, a boy named George accidentally ate a peanut M&M and turned bright red. We thought he was choking. This was in the 1975, when…
Back in 2015 I was diagnosed with POTS, a form of dysautonomia. Dysauto-what? Yeah, exactly what I was thinking. After doing all my research and being super upset at what…
While there is good scientific evidence backing up the fact that omega-3 fatty acids found in fish oil can help slow or even prevent heart disease, but does fish oil…
Milestones. Oh, the firsts! When you have a new baby, your whole life revolves around firsts: first bath, first smile, first tooth, first roll, first uninterrupted night of sleep (yes!).…
Ron Taylor is a smoker who has the lungs of a 126-year-old man. According to the Alpha-1 Foundation's website and the Memorial University Gazette, his diagnosis started when he went…
October is a time for celebrating autumn and Halloween in the US. But it's also Gaucher Disease Awareness Month! Mark your calendars for this Gaucher Disease event: Who: The National…
I am a firm believer that amidst all the fads that come and go, there is one trend that will always be popular. This, of course, is the do-it-yourself craze…
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