Jaiden, a twelve-year-old boy, has been diagnosed with stiff skin syndrome, a rare disease that causes his skin to harden. His family has been sharing their experiences with the condition.…
I'll start this article, like many others, by mentioning that although I'm convinced I know everything about everything because I minored in biology in college, I'm really not a doctor.…
According to a story from the Washington Post, a new technique for delivering genes into immune system T cells could make immunotherapy a much more accessible option for treating rare…
According to a story from Chronicle Live, children struggling with the rare childhood cancer neuroblastoma and their families celebrated the news that the National Institute for Health and Care Excellence…
Happy Friday, everyone! We hope the weekend is bringing everyone some time to relax. Today, we're wrapping up the week with four stories we wanted to highlight this week. We…
July 30th is Gastroschisis Awareness Day! Gastroschisis is a rare birth defect of the abdominal wall. With this condition, the baby’s intestines stick outside of the body through a hole in…
The organisations Guerbet and IBM Watson Health are collaborating to develop an artificial intelligence tool designed to support the diagnosis and care of liver cancer. The source article can be…
According to a video and article published by Duchenne UK, Professor Steve Winder has been granted additional funds to study the effectiveness of soy as a treatment for Duchenne muscular…
According to a story from PR Newswire, the biopharmaceutical company AbbVie has recently announced that it has sent a supplemental New Drug Application to the FDA for its product venetoclax,…
People Magazine published an article about 20-year-old Kara Dunn who suddenly became paralyzed during a vacation to Spain, due to a rare disease she didn't know she had. Guillain-Barré Syndrome…
According to a story from the U.S. Food and Drug Administration (FDA), Commissioner Scott Gottlieb has released a press release which discusses in detail the agency's efforts in the development…
The U.S. Food and Drug Administration (FDA) has just approved a treatment for smallpox. According to the World Health Organisation, there hasn’t been a known natural infection from smallpox since…
July is National Cleft & Craniofacial Awareness & Prevention Month! Cleft and craniofacial conditions affect thousands of infants, children, teens and adults in the US each year. Some are born with…
Last month at the United Leukodystrophy Foundation’s Family Conference, special education teacher Sharon Bergfeld, MASE, LBSI, LBSII, led a break out session on Student with Disability/Schooling Advocacy. The session provided…
According to a story from PharmaTimes, the pulmonary arterial hypertension drug selexipag, developed by Actelion, was unable to make the cut to obtain coverage on the NHS in England. The…
Recently in Charcot‐Marie‐Tooth news, progress has been made in identifying better testing to use as outcome measures for people living with Charcot-Marie-Tooth disease type 1A. A study called “Outcome measures…
This is a continuation of An Interview with the Unstoppable Helena Baker. We had just learned about the multiple decades it took for her to receive her diagnosis of Fibula…
According to a story from PBS, the FDA has been approving new treatments at a noticeably faster rate than it has in the past. As a result, it appears that…
BuzzFeed News reported a few weeks ago about the tragic story of 16-year-old Sara Manitoski who died of Toxic Shock Syndrome: a rare condition with a very common source. Toxic shock syndrome…
Happy Friday, everyone! We hope everyone's drinking water, wearing sunscreen, and taking a little time to relax this summer. As we get ready for the weekend, we've gathered four recent…
According to a story from bioportfolio.com, two companies, Ionis Pharmaceuticals, Inc., and its affiliate Akcea Pharmaceuticals, recently announced that its product inotersen (to be marketed as TEGSEDI) has gained approval…
According to a story from NPR, plastic straw bans have been gaining traction across the U.S. One of the most shocking examples of planetary degradation as the result of human…
According to a story from the Deccan Chronicle, researchers may have discovered a new treatment for Dupuytren's contracture that could offer substantial benefits over currently available treatment options. The scientists…
Bruce Howell is 63 years old living with retinitis pigmentosa. He’s been legally blind since age 37. As a result, public transportation is a critical service to him. Without the…
According to a story from CNN, Nick Foles, who plays for the Philadelphia Eagles, helped lead the team to victory at the Super Bowl, and was awarded MVP for the…
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