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…
Denise West and Donna Crouch have much in common. It’s no surprise that they’ve become friends and grown to support one another. Perhaps what they have most common in common…
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…
Kendall and Ava are not related by blood. They do, however, have one amazing thing in common- something that saved their lives and defeated autoimmune hepatitis. Keep reading, or follow…
Ellie the stuffed Emesis Elephant recently did what most human beings could only dream of. She flew. To be clear she went skydiving to raise awareness for cyclic vomiting syndrome…
The active and adventurous Devaney Mehl was sidelined by excruciating pain when only 28-years-old, originally reported in Regina Leader-Post. After many incorrect diagnoses, she later learned she had developed the rare…
Ten days after the birth of her second baby, Pam Moore discovered she was unable to move her face. She was quickly diagnosed with Bell’s palsy. The sudden change shocked…
Joy Littlesunday is just one of many Navajo newborns who were screened and thus saved from severe combined immunodeficiency by a successful bone marrow transplant at UC San Francisco, reported UCSF…
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…
David Baldwin is a 37 year old man from Ross-shire. Based on appearances, he should be living a normal, healthy life. Appearances can, however, be deceiving. David suffers from Cerebrospinal…
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…
Charlie Druken's dreams came true when he was selected to the drop the puck at the Boston Bruins' Alumni game recently, reported The Telegram. It was a night the eight-year-old…
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…
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