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…
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 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…
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…
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 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…
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…
It all started with a headache. 11-year-old Canyon Martin wasn't acting like himself and was sent home from school with a headache, reported Standard Times. A quick doctor visit after…
Ryan Cole is a beautiful baby. You would never know from looking at him that he was struggling for life fighting a rare disease called biliary atresia, reported Courier Mail.…
Many young children admire professional athletes. They dream of becoming one themselves, or at the very least aspire to meet them. For Jase Johnson, a child with Chiari malformation, this…
When 24-year-old Andy Pallone finally met Santa Claus, it heart-warmed his mother, and unexpectedly the rest of America, reported Belleville News-Democrat. His mother, Jennifer Pallone, wanted to capture the moment…
While April Archote faces the physical pain and financial hardships of living with a rare brain disease, she continues to be positive and count her blessings, CCHeadliner reported. In 2013, April was…
After over a decade, Debbie Zelman, founder of Debbie's Dream Foundation, succumbed to her stomach cancer at age fifty. From the beginning, Debbie's prognosis was not good. When the cancer…
On Christmas Day, Chris Bombardier, a man suffering from hemophilia B, traveled to Antarctica. While most of the people that go there scientists, Chris has a completely different goal in…
Daniel Downing received a personal visit from certain alien robots from outer space. The Transformers Autobots came to town to hang out with the 5-year-old terminally ill boy who has…
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