According to a story from Newswise, a recent study shows that Merkel cell carcinoma, which historically has affected only a few thousand people per year, is becoming more prevalent, especially…
Tomorrow is Rare Disease Day! There are 7,000 rare diseases and disorders that affect about 30 million Americans. Three hundred million worldwide are affected by rare diseases and 95% of those…
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,…
Pompe disease affects roughly one person in every 40,000. One form of the disease specifically develops within the first months of birth, or early on in childhood. Now, the first…
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…
According to a story from the International Business Times, researchers have successfully grown kidney tissue that can filter and produce urine within a living organism. This has the potential to…
You'd be excused if many (or even most) of you have never heard of this rare disease - which is why it's important to observe rare disease awareness months. Marfan…
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 the Washington University School of Medicine in St Louis, scientists from the university used a sample of skin cells from diseased patients and transformed them…
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…
These days it’s difficult to walk through a public gathering and not see a "Keep Calm and Carry On" T-shirt, poster, coffee mug, or bumper sticker. As a catchphrase originally…
For the longest of time, written wills were the go-to method for granting a patients end-of-life wishes, yet now videos are becoming more prominently used, originally reported by Times Herald-Record. Today…
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…
At the beginning of February. BioPontis Alliance announced a partnership with Massachusetts General Hospital. Together, the two set their sights on Huntington’s disease. Specifically, they hope to develop new treatment options.…
It's no longer Valentines Day, but we're still sending love to the rare patient community! It's been an exciting week for Hemophilia B patients waiting for a new treatment! We…
Multiple sclerosis represents one of the leading causes of disability in young adults. It’s an autoimmune condition that eats away at parts of the body’s nerve cells. Recent research by…
Multiple myeloma is a cancer of the blood that develops in the plasma cells found in soft tissue at the center of the bone, called bone marrow. Bone disease is…
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…
Michael Mavis, a fitness trainer from Granville, Michigan, recently experienced flu like symptoms leading to paralysis, later learning it was much more than a mild sickness, reported Grand Rapids Patch.…
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