Renee Smith deals with an unusual feeling and she might be the only person who does. She feels like there are drops of water dripping on the side of her…
A UK family was almost certain they'd lose their baby, but it was her giggle that filled them with hope. When she turned 2 years old, Poppy Smith underwent a…
Warwick Davis is a big name within the Star Wars community. Those that follow the movie universe religiously will know him for his role as Wicket the Ewok in Return…
Two-year-old Clark Cutler's parents felt alone when dealing with his rare disease, until they stumbled upon the United Leukodystrophy Foundation. Clark was diagnosed with Pelizaeus-Merzbacher disease when he was just…
We've heard a lot about the biology behind Zika's causes of microcephaly but haven't heard a lot about the patients themselves. Keegan and Corey Kistenmacher had their daughter Cassidy on…
It's became common knowledge to the healthcare community that the Zika virus was the source of microcephaly, a birth defect that causes baby's heads to develop much smaller than they…
Eleven-year-old Talia Duff finds herself in the rare situation of being one of only 22 people in the world to suffer from a rare disease. Last year, Jocelyn Duff received…
Pauline Siegel was 35-years-old when she was unexpectedly struck with a rare disease that would render her disabled from the waist down. The diagnosis took several painful days to finally…
Sean Kisielnicki's life is ruled by Hunter syndrome. This rare condition not only affects him, but takes a toll on the entire family. The morning routine is always the same.…
Former Jersey Boys star Jeff Leibow, organized his first Neurofibromatosis Hope benefit concert in Las Vegas in 2011. His hope was to make it an annual event that would go…
Abi Galatia suffers from stage three osteosarcoma, a very rare and very deadly form of bone cancer. The weird part is, she dreamed that she would get the disease for…
Let's take a trip to West Yorkshire, England, where a rare disease story is unfolding in the intense world of rugby. Rob Burrow is a retired English professor turned rugby…
Exciting updates have come out of Alnylam Pharmaceuticals. They just released data from one of their highly anticipated trials for its leading rare disease drug. It looks like it did…
Ceridwen Hughes is known for capturing visceral moments of reality in striking photography series. This time, she has navigated into the devastating world of rare disease and she's using her…
On Tuesday night, children hit the streets for their Halloween candy quest. Because of her rare disease, Emily Sawyer, had to stay in. But that didn't stop the community from…
Sometimes patients receive the hard-hitting news of short life expectancies. What happens when a doctor tells you you won't make it to adulthood? What becomes your life priority? Sometimes, however,…
A new book was just released called “Nasty Women: Feminism, Resistance, and Revolution in Trump’s America,” a collection of essay's written by empowered women speaking out against life in Trumpland.…
Some diseases are so rare that it feels like researchers have given up on finding a cure. So was the case with Mucopolysaccharidos 1 (MPS I) and one such young…
As seen by her story on IDF's website, for Kayla Kuehl, her diagnosis of an extremely rare disease happened over the course of several years. It's called Common Variable Immune Deficiency…
Presage Biosciences will be receiving its first grant from The Mark Foundation for Cancer Research, a brand new nonprofit organization. Presage developed something called CIVO, which is a drug-development platform.…
We constantly hear about cancer deaths, but every once and a while, we hear the rare cases of cancer survivors. Linda VanDershaaf is one such survivor and today she is…
If you made it this far, that means you read the headline. And yes, you read it correctly. The Canadian Medical Association Journal (CMAJ) just released a case study which…
The highly anticipated second season of Stranger Things premiered today and with it, comes the excitement and theorizing of its huge fan base. One of the show's lead actors, Gaten…
Our bodies are complex and unpredictable machines. We can try our best to keep them healthy, but sometimes nature does its work, resulting in something we never could have planned…
When Kent Allen was told he had a year to live, he was hopeless. A year simply wasn't enough time. According to Waikato Times, over ten years ago, Kent was…
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