For patients, caregivers, healthcare providers, and anyone interested in learning more about liver diseases, there is a website called Focus. This website is organized by CLDF, which stands for Childhood…
According to a lovely post on the International Waldenstrom's Macroglobulinemia Foundation website, Julianne married the love of her life at the age of 19; her husband John was 30. In…
Recently, in a new BBC documentary, a new innovative device was featured that offers a unique and engaging way for people with cystic fibrosis to handle one of the challenges…
When the community found the 37-year-old woman she was already dead. She had been brutally murdered, one hand had been cut off, and her teeth had been removed. She is…
Recent research has found new discoveries for those with neurodevelopmental disorders like Rett Syndrome. These new findings offer hope that those with mental disabilities like autism do not necessarily have…
Great Strides, hosted by the Cystic Fibrosis Foundation (CF Foundation) is the largest national fundraising event for cystic fibrosis. Over 125,000 people a year lace up their walking shoes to…
Earlier this year, Kyle Petty made his way across the country for his annual fundraiser appropriately called "Ride Across America." While Petty, a famous NASCAR racer, says one of his…
Recently on Recombine, a website dedicated to providing up-to-date blog posts about planning a healthy family, a story popped up from a young woman sharing her experiences about being a…
Only 1 in every 250 people have familial hypercholesterolemia (FH) worldwide and it is widely underdiagnosed with more than 90% of people not knowing they have it. In fact, according…
The International Foundation for Functional Gastrointestinal Disorders website has a section where patients can share their story. Hollie's story is one of the featured stories. Her story starts in 2009…
Little Emily Whitehead is looking attentively at a butterfly that has landed on her finger. She coos at it and lets it rest on the tip of her thumb peacefully.…
Why is there a growing trend of adults receiving care from pediatric doctors? Meet Rachael Goldring. She is a vibrant 24-year-old who has just spent her first year since birth…
Adrenoleukodystrophy (ALD) is a genetic disorder that is very rare and usually occurs in childhood. People with ALD have two options for treatment, both of them less than favorable and…
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…
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…
According the Cystic Fibrosis News Today, when Claire was first born, she was only expected to live to the age of 10. Then Claire’s life expectancy lengthened to 18, and…
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…
Primary immunodeficiency diseases (PI) are a group of more than 300 rare and chronic disorders where part of the body's immune system is missing or does not function properly. Since…
According to the AKU Society, Flavia was only a few weeks old when her parents noticed that her urine had stained her diaper an unnatural brown color. Flavia and her…
I wouldn’t exactly call myself a meditation guru. I was first introduced to the concept of meditation after a class on Buddhism in college. I attempted to mediate for several…
These days there is an app for everything. There's an app for how to cook a nice meal. An app to remind you to meditate. Countless apps for finding your…
What happens when you imagine running a marathon? Unless you are an avid runner, the thought may make you laugh or even cringe. Running even one marathon may seem nearly…
The American Porphyria Foundation has a section on its website dedicated to telling patient stories. It gives voice to people's experiences and allows them to connect with others and share…
One grandfather in the UK is took a nontraditional route to show his love and support for his granddaughter and her rare disease. Some people run 5Ks, some people go…
You have probably seen them, or at least heard of them. In fact, I’d go so far as to say you’ve seen them within the past week or two. The…
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