No family faces life's unexpected challenges better than the family of Bella and Liam Brya. Allison and her husband, Bill, deal with the struggles of having two children, Bella and…
Human beings have always speculated about the future. Science fiction is probably one of the most prominent examples, and stories are replete with robots, lasers and flying cars. But no…
In 2009 Emily Rochac Argueta realized her vision was rapidly deteriorating headed towards blindness, reported Times Union. The aspiring physician assistant was diagnosed with keratoconus, a rare eye disease that…
It's been 35-years since the passing of the Orphan Drug Act, and creation of the National Organization for Rare Disorders (NORD), reports PR Newswire. Even though these organizations recognize there…
According to a story from tennessean.com, Trishia Warrick, a Michigan native, moved down to Tennessee when she was in eighth grade. Sadly, she never felt very welcome growing up in…
Jacob Engram, a twenty-one year old high school student with Apert syndrome, became the first junior officer for the city of Vicksburg. Read more about this story in The Clarion. Apert…
According to a story from Pet Age, a combination of business leaders, pet owners, and reptile hobbyists came together and raised $45,000 for the grieving family of Anna Hupp, who…
High school football player McCaulley McGuire doesn't let his isovaleric acidemia keep him from playing the game, reported Times Free Press. Diagnosed with the rare disorder when he was only…
Classifying Brown-Vialetto-Van Laere syndrome (BVVL), also known as Riboflavin Transporter Deficiency (RTD), as a rare disease in an understatement. There have only been about 100 cases ever diagnosed. That means…
Rare diseases sufferers are the unsung heroes who often fall into the shadows behind more common cancers, but some scripted and reality shows are casting a spotlight on them. In…
Nanette Whitfield, stood beside her best friend and husband as amyotrophic lateral sclerosis (ALS) painfully took his life, reported The Record Courier. Watching someone you love slowly lose everything has…
It's hard to find funding for rare diseases research. Patients and the people who love them don't have the same established networks of support that help people struggling with more…
When someone is diagnosed with a rare disease and it looks like their days could be numbered, it can often be difficult to cope. Many people simply don't want to…
According to an article at publicnow.com, the FDA has granted Breakthrough Therapy Designation to avelumab combined with INLYTA (axitinib) for people with advanced renal cell carcinoma. This designation should accelerate…
Good news for Prometic Life Science new drug application! The pharmaceutical company has been searching for a cure for idiopathic pulmonary fibrosis (IPF), a rare lung disease which you can…
According to a story from wect.com, Dr. Jorge Figueroa, who has been a teaching for nine years at the University of North Carolina at Wilmington, has developed a reputation as…
For Johanna Watkins, a woman from Minnesota, life can be like walking through a minefield. Ms. Watkins had mast cell activation syndrome. As a result, exposure to everyday experiences such…
The Chinese Zhiying family face their ultimate breaking point when they learn they can no longer afford the medical bills needed to save their 7-month-old son, Yiwei, who is fighting…
Despite the obvious cliché nature of the old adage, knowledge really is power. Technology and medical advancements give doctors and researchers more information than anyone could have fathomed even a…
Doctors always emphasize the importance of sleep for newborn babies, but some babies may have greater challenges to face when it comes to getting a solid night of sleep. A…
Doctors told Shawn Rogers, who they had diagnosed with Pelizaeus-Merzbacher disease, that he might only have days to live. However, today he is swimming with dolphins, a dream that he…
A new study suggests that the antidepressant medication clomipramine may function to relieve symptoms of multiple sclerosis. In this instance, the drug was tested to treat progressive multiple sclerosis, in…
Skylar Marie came into the world as a beautiful healthy baby. It wasn't until 2 months later that her and her family's world would change forever. She was diagnosed with…
Olivia Ports recently performed for over a thousand people, including the Mayor and Governor of Chicago, helping to raise $3.75 million for research by Lurie Children’s Hospital in only one…
One of the medical research field's biggest developments recently - within the last 5 years! - is a new form of gene editing, also know as genome editing. Gene editing refers to…
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