According to a story from CBS News, Clay Emerson, from New Jersey, is hoping to use Father's Day in order to raise awareness about his three year old daughter's rare…
Finding the right doctor for a patient can often be a long and personal process. It’s not just a matter of effectiveness or efficiency, but a matter of comfort and…
I've known some wonderful fathers throughout my life. My own father was a gem. My siblings agree. However, it was not until I became immersed in the rare disease world…
The below article was originally published on June 14th, 2018 in Miracle Flights Newsletter, The Co-Pilot, and is being republished here with permission. Rebecca is big sister to 10-year-old Amanda…
Click to read parts one and two of Joanie's story. Since 2012, when I left my job as an educator, I have tried many different modes of medical therapies. I'm…
I am a caregiver mom to my two special needs, young adult, rare disease kids. I am also a recent widow; previously, I was a caregiver wife to my very…
A Nigerian mother, Hafsat Aliyu has penned a moving tribute to her beautiful daughter, Zainab, who died of Hodgkin lymphoma, a type of blood cancer, on May 7, 2015. She…
To read part one of Joanie's story, click here. In 2014, I developed excruciating back pain and eventually the doctors found I had two spinal cord tumors. One was on…
Mallory and Dave Holmes were excited. Like many couples, they were eagerly awaiting the birth of their first child. After 20 weeks of pregnancy, however, the couple received news that…
At age 60, I am learning to love and accept the woman I am right now. This is long overdue: I never envisioned a life walking with a white cane…
As a 26-year-old working mother, all of life seemed in place. A rewarding job, a precious baby, and a supportive husband filled the hours and made for great memories. Days…
In 2017, a group called “Traveling CVS Warrior” was created on Facebook. This is a group I created that sends a stuffed animal aka a Cyclic Vomiting Syndrome (CVS) Warrior to…
According to a story from Rare Disease Report, Nichol Kirby, who was diagnosed with acute intermittent porphyria in 2015, faced an arduous path to her diagnosis. Her constant pain, which…
According to a story from abc.net.au, ever since Massimo Damiani was first diagnosed with a leukodystrophy, his parents, Sally and Stephen, have been committed to promoting research efforts and new…
To read part one of this story on cystinosis, click here. Briana and Ashley are two adult women from opposite regions in the United States. Briana lives close to her…
Nevaeh was born on the 3rd of September at 12:38 AM by emergency section due to the cord being wrapped round her neck, which was causing her heart rate to slow…
She wears a lacy white dress with a long, white veil. Her beautifully shaped eyebrows arc over long-lashed eyes. Her smile, illuminated by bright red lipstick, speaks of the happiness…
According to a story from the Oxford Mail, Stuart and Kira Connor were devastated when their daughter Grace, who was only three years old, suddenly passed away because of mitochondrial…
According to a story from the Daily Herald, Kevin Barnes, a man from Wauconda, Illinois, believes that his experience with esophageal cancer helped spur his own spiritual growth. This is…
According to a story from Telegraph & Argus, 56 year old Andrew Johnson is getting an innovative new procedure that is offered on the UK's NHS in order to relieve…
When others learn that you are the parent of a child with a rare disease, they most likely correctly assume that doctor appointments and hospitals might be involved. Yet few…
According to a story from CNN, substitute teacher Cynthia Tisdale was widely admired by her family and friends. Cynthia was murdered in the Santa Fe High School shooting on May…
I'm Celeste, and I'm sharing my story because too many ill people go undiagnosed and too many healthy people know nothing of it. Being chronically ill is like (for lack…
According to a story from ktvq.com, Susan Henderson of Bozeman used to revel in painting vast, impressive canvases and teaching art classes geared towards children. Unfortunately, her diagnosis of chronic…
The Young family from Oregon, U.S. have used genetic screening to test their embryos for a variation of the BRCA gene that significantly increases the risk of breast cancer, reports…
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