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…
Puberty, development, and menopause - most parents have found that explaining these concepts to kids, though entirely natural and unavoidable, comes with a certain degree of discomfort. In girls in…
A new film coming out this month will change the way you think about Apert Syndrome and similar disease. Keep reading to learn more about the film, or follow the…
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…
I was in fourth grade at the K-12 parochial school in a small, northern town in Wisconsin. After Kindergarten, we all were divided into two to three grades per classroom.…
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…
Elliott Cunnew, from Collaroy, Australia is what you might call a cool dad. Elliot is the father two kids, 20-year-old Amelia, and 17-year-old Lachie. During the day, he sells private…
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,…
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…
According to Global Genes' Rare Daily, Alexi’s mother always knew her child was different. It would take almost nine years to find the proper ADNP diagnosis, but Alexi’s mother never gave…
I know many people who would love to go to a local support group, but there either isn’t one in your area or you are not well enough to attend.…
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…
Rare Disease family members often hear, “I don't know how you do it.” This remark usually refers to the physical and emotional aspects of the condition, but those who make…
Popular wisdom tells us that the first step to fixing a problem is admitting that you have a problem. This works for individuals, like alcoholics, thanks to William Griffith Wilson,…
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…
This past Sunday, October 22nd, Steve Nugent, 53, crossed the finish line at the 42nd annual Marine Corps Marathon in Arlington, Virginia. A big group of the people who loved him…
It all started when 12-year-old Mia Trease started having knee pains during a summer of softball. The phone call with the bad news couldn't have come at a worse time.…
Nine-year-old Giovanni Hamilton is a victim to one of the rarest diseases in the world but he won't let it define him. The rare condition is called Schwartz-Jampel syndrome (SJS)…
Ten-year-old Coleman Walsh always wanted to be a professional hockey player and now his dream has come true. According to the Daily Mail, he just signed with the Massachusettss's Babson…
We came across a 2016 CBS story about Harlow, a Golden Retriever service dog on social media that had already reached over 226K Likes on Facebook. This celebrity dog shows…
When a 15-year-old puts on a few pounds, it’s often blamed on too many slices of pizza, or too many hours hanging out online with friends. But what if it’s…
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