Why Important Research Is Being Sold To The Highest Bidder
Wanting to learn more is a common desire for many people with a rare disease, and researching online is probably the most common way people do that! Naturally, we're always looking for…
Wanting to learn more is a common desire for many people with a rare disease, and researching online is probably the most common way people do that! Naturally, we're always looking for…
Most parents spend at least part of their parenting life wondering, “What will I do today that permanently screws up my kid in the future?!” Which to be honest, is…
A recent study at the University of Edinburgh in Scotland is showing results that link genetics to certain forms of mental illness. Briefly mentioned was the fact that, although the…
In the ongoing fight against cancer and all its various forms and permutations, all doctors can agree that a timely diagnosis is critical to successfully slowing or halting the spread…
As the father of a newly-minted teenager, I’ve come to understand all too well the fleeting nature of childhood “firsts”: First words, first steps, first artwork, and other moments in…
Children’s books have a way of staying with you. My mom used to read to me all the time growing up. Just about every night before bed, she’d grab a…
Press release: 24th May 2016 Breathe With Me Strawfie Challenge The Team GB Trampoline Squad are the latest in a fast-growing line of sporting stars and celebrities to back the ‘Breathe…
Endocrinologists are continuing to debate the possible link between acromegaly and cancer, but have not made an absolute connection--if anything, researchers have noted great inconsistencies in their findings. While that…
I was reading an article in Rolling Stone magazine about a young internet celebrity, and buried at the end of the overblown descriptions of the young man's activities on Vine…
Hereditary Angioedema (HAE) is a rare disease—like an incredibly rare disease, affecting only about 1 in 10,000 to 1 in 50, 000 people. Despite that, over recent years, it’s gotten…
For old-timers like me who grew up in the Dark Ages before the internet, it’s still amazing to think that you can access what amounts to the contents of the…
Most of us are familiar with the film The Theory of Everything, which chronicles Stephen Hawking’s affliction with ALS. But there is another film just as compelling: Transfatty Lives by…
Monday, May 16th was HAE Awareness Day. In addition to getting the word about HAE out to the general public and medical communities, every year HAE Day strives to "create an environment…
Rare diseases often go undiagnosed because they are, after all, rare. A rare disease isn't usually the first thing anyone thinks of, in light of certain symptoms. It's only when doctors know what…
At 17, she suffered excruciating chest pain, then collapsed. That is when Tess Dunn got the explanation that she had a hole in her heart. Born in the Philippines, Tess was…
A gymnast must be in top form to participate in competitions. As reported by the Amery Free Press, when Elli Meagher began to have problems with muscle weakness, weight gain, and…
“ Many describe the symptoms of HD as having ALS, Parkinson’s and Alzheimer’s – simultaneously.” - The Huntington’s Disease Society of America States For almost 50 years research into the cause and…
A mother of three in Scotland had experienced dystonia symptoms since childhood, and these symptoms got progressively worse over the years. Like so many with a rare condition it took…
The HAE community cheered in July of 2015 when another new therapy was approved by the FDA to treat acute HAE attacks. Now, the pharma company has another reason to cheer. The…
The right doctor and the right hospital can make all the difference when your child is diagnosed with a rare (and frankly terrifying) medical condition. That’s what London couple Sukhi…
Researchers at UCSF are searching for volunteers to participate in a clinical trial studying the effects of Deep Brain Stimulation on isolated/primary Dystonia. To participate you must meet the following…
A new study by pediatric researchers at Harvard Medical School and Boston Children’s Hospital shows that about one in 10 parents catch mistakes that physicians miss. The study suggests that parents and…
Hannah Kiresuk, 20, is a noted high school skier who has spent much of her free time going downhill. At 16, she was diagnosed with myasthenia gravis, a rare disorder…
With baseball season upon us, we wanted to check in on our Ankylosing Spondylitis (AS) celebrity baseball player Franklin Guitierrez, who turned misfortune into a learning opportunity, and rises like the…
For 21-year-old Tanner Pyeatt, the future is uncertain. Diagnosed with Duchenne muscular dystrophy at the age of four, he gradually lost the use of his legs and has been wheelchair-bound since age nine.…