Brandi Lawrey describes her son, Gavin, as a little man because he continually shows bravery and courage well above his age, reports News-Press. Gavin was diagnosed with a rare mitochondrial…
According to a story from macleans.ca, Julia Alton felt hopeless when she first started to experience the symptoms of her Fabry disease. However, she refused to let the disease hold…
Fashion blogger Yavanna Keogh who runs Makeupmonster just took to social media the devastating news of her son's recent diagnosis, first reported by Mirror. Yavanna and her partner from Dublin,…
Dena Winchester, a sophomore at Rutgers University, faces the struggles that come with her condition by advocating for change, reports New Jersey Jewish News. After she was diagnosed with lipodystrophy…
Sports Illustrated’s swimsuit issue makes a splash every season it comes out. Historically, this has not always been for the most empowering reasons. This years issue, however, features at least…
According to a story from sixthtone.com, patients with hemophilia living in China are using paper cutting to help restore their dignity and reclaim control of their lives. Hemophilia is a…
Getting back to the workplace post-cancer treatment is known to be good for cancer survivors, as they establish a normal routine again, but with that said, there are many factors…
After contracting an incredibly rare disease, 19-year-old star athlete, Brooke Kellett, was suddenly paralyzed, reports KY 3 News. The doctors diagnosed her with Guillain-Barre syndrome, a disease that attacks the…
While Miguel Cervantes stunned everyone during his Alexander Hamilton audition in Chicago, he couldn't help but think of his baby girl. She had just been hospitalized for something unknown at…
No couple wishes for a high risk pregnancy and a premature birth. But according to a story on The Today Show's website, new mother, Mallory Brinson, was grateful for…
Alondra, a 14-year-old freshman in high school weighs only 65 pounds. This is a seemingly easy giveaway that she was sick, but initially the weight loss was attributed to her…
Perhaps it is because parents often feel dissatisfied with the results they receive for their children through traditional medicine that they sometimes look elsewhere for treatments to improve the conditions…
Ovarian cancer diagnosis is extremely rare in women under the age of 20, yet Kronenwetter teenager, Khiana Bradsaw, was diagnosed at the young age of 13-years-old, reports ABC 9 News…
Meisyn Ellison, a 13-year-old in Utah, adopted from China, battles the debilitating effects of her rare disease and now seeks to find her biological parents in hopes to give doctors…
Jahkee Johnson, a 16-year-old from Cedar Grove High School, is exceptional and accomplished for many reasons, beyond the fact that he tackles challenges and goal without the help of legs,…
As an official Friend of Rare Disease Week, we are highlighting some of our heroes and rare disease warriors' stories. Below was submitted by the ADNP Kids Research Foundation and…
CNN published this incredibly story about love and bravery earlier this month - and it's worth a second look. Sophia Weaver was born with deformities to her hands, feet, and…
According to an article from The Huddersfield Daily Examiner, Isla Sykes was diagnosed with mucopolysaccharidosis (MPS III), otherwise known as Sanfilippo syndrome, at age four. Her uncle Ryan Townrow, is…
According to a story from Yahoo News, The family of Isla Caton, a three year old girl diagnosed with neuroblastoma, has raised enough money for her to travel to New…
According to a story from tdn.com, Victoria Arlen recently discussed her past experiences with transverse myelitis and acute disseminated encephalomyelitis, which left her in a coma-like state for years. You…
Ever since New Brunswick 3-year-old, Zaccari, was born, they knew he needed a new kidney. CTV News Atlantic originally reported that Zaccari was born with congenital nephrotic syndrome, a rare…
Last year, then sixteen-year-old Joshua Martineau who has Kabuki syndrome and Tourette syndrome, had a challenging experience at his local Cineplex. According to ChCh, Joshua was excited to celebrate his birthday. He…
Mary O'Callaghan has experienced more loss in the past decade than anyone should have to face in multiple lifetimes. Originally reported by the Telegraph & Argus UK, Mary lost both…
According to a story from wncn.com, Seneca Ottey was diagnosed with esophageal cancer at sixty years old. Seneca was the father of Michelle Urban, who works as a pharmacist in…
In a lot of ways, MacKenzie Bozeman looks like every other child. She seems joyful, and energetic. She gives her parents plenty to keep up with. It would be almost…
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