While other kids his age run amok in the wildness of their Terrible Two's, Lincoln Woodmass remains immobile. No running, no jumping and the possibility of never walking again. You…
Last week, science continued to break boundaries and save lives. In this case, a new gene therapy was used by doctors in Europe to replace the decaying skin of a…
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…
Doctors, medical resources, health classes, and moms agree: exercise is one of the best things you can do for your body and health. It helps manage some chronic conditions, and…
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…
Meghan Waldron, a 16-year-old girl in Massachusetts, disregards comments about her size, “Sure I’m small, but so are poison dart frogs!” Meghan runs track and country, plays violin and cello,…
Karen McLaughlin's exhibition Critical Path, hangs in at the Martin Batchelor Gallery until November, 30th. Her exhibit includes a combination of soft graphite drawings and bolder pastel renderings. The work is delicate,…
For now, Ann Marie Harte’s five-year-old son, Lewis, can still walk. He can no longer run, and he has a hard time with the stairs. The trampoline exhausts him, and…
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…
According to an encouraging letter she wrote in The FCS Foundation, the day that Melissa learned that her beautiful 3-week-old daughter had a rare disease- familial chylomicronemia syndrome (FCS), or lipoprotein lipase…
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.…
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