According to a post from gaucherdisease.org, clinical trials are an essential component to the development and testing of new therapies for Gaucher disease and other rare diseases. For some rare…
September 25th is International Ataxia Awareness Day! The National Ataxia Foundation (NAF) has great resources to help spread the word and show our solidarity for the Ataxia patient community; on…
Tay-Sachs Disease September is Tay-Sachs Disease Awareness Month. Voted on by the Senate unanimously in 2008, this month aims to spread awareness about this disease and the importance of carrier…
According to a story from delmarvanow.com, a nine year old boy named Trey Kearns has progressive familial intrahepatic cholestasis (PFIC) a rare disease that affects the liver. The symptom that…
According to a story from scienmag.com, a pair of five year grants that were awarded to Dr. Mark Zylka will go towards projects focused on autism and the rare disease…
According to a story from the Washington Post, Bob Schwartz is a walking, talking medical mystery. He lives with a strange and diverse array of difficult symptoms, and after being…
According to a story from Benzinga, the medical device company V-Wave Ltd. has recently announced that a product in development by the company has earned Breakthrough Device designation from the…
Genes themselves are a relatively new discovery, found only about a century ago. Gene therapy, a medical procedure that alters genes to address disease, is a concept a few decades…
According to a press release from the California-based biotechnology company Ardelyx, the US Food and Drug Administration (FDA) recently approved the company's irritable bowel syndrome drug candidate Ibsrela (generic name…
A recent publication from BMC Pediatrics outlines a case study of Kawasaki disease in a group of infants from Italy. Because Kawasaki disease is a rare disease (with only an…
As originally reported in the Washington Post: many parents of children with rare diseases are familiar with the agony of mystery surrounding their children’s medical conditions. The frustration of searching…
Allostasis Allostasis is a concept coined by Joseph Eyer and Peter Sterling, colleagues at the University of Pennsylvania. In 1981 they published a paper which contested previous theories on the…
One particular problem for those with rare diseases is that the manifestation of the disease is often particular to the patient, each with their own quirks and tendencies. This makes…
Happy Thursday everyone! We're seeing more and more leaves falling over here, and the weather is genuinely beinning to cool down. Today, we're lighting a two part patient story covering…
Bob Hussey Bob Hussey is a 62-year-old mechanical engineer who, thanks to his own experience as an ulcerative colitis patient, has created a new invention that could help a wide…
In western culture, many people tend to frame body and mind as two distinct parts of us. There are mental health disorders, then there are physical ailments. To treat disease,…
By: Maria Palombini, IEEE-Standards Association For more than a decade there has been much propaganda on educating and encouraging patients to manage their healthcare. This was a direct shift in response…
ABC's Bachelor franchise isn't exactly known for not dramatizing the medical experience of contestants (if this article were in video format, we'd insert a montage here of all of the times…
Stem cell therapy is one of those new health trends that, in many cases, make doctors and scientists cringe. The lack of evidence and research makes critics call it not…
According to a story from Newswise, a recent phase 2 clinical trial testing a combination treatment for the rare cancer rhabdomyosarcoma has displayed encouraging results. The combination consists of the…
Click here for Part 1 of Aunika's Story Despite the success of the transplant, baby Aunika wasn’t out of the woods yet. She continued to have issues with breathing and…
As originally reported in Scimex from a press release by The MITO Foundation, the main five patient advocacy groups on mitochondrial diseases have pledged to work together to afford 1…
Every ultrasound Maggie had showed that her daughter, Aunika, was perfectly fine. The family was left in shock when she was born struggling to breathe. Baby Aunika was rushed to…
According to a story from Science Daily, the University of California San Francisco's Benioff Children's Hospitals have successfully treated an infant with juvenile myelomonocytic leukemia. The drug used for treatment…
According to a story from Medscape, a recent study is highlighting the fact that many thyroid cancer survivors are still worried about cancer-related problems years after the conclusion of treatment.…
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