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.…
February is Turner Syndrome awareness month! Turner Syndrome is a chromosomal condition that affects approximately one in every 2,000 women. The condition occurs when a woman lacks all or part…
Michelle Myers, a mother of seven and American citizen who has never been out of the country, suffers from a rare disease that causes her to wake up with different…
This Wednesday, the last day of February is internationally-recognized Rare Disease Day - a day when we realize that in fact - rare diseases are not so rare. There are…
According to a story from the Sun Herald, one in ten Mississippi residents suffer from one of the 7,000 diseases that are considered 'rare' in the United States. In the…
According to a story from brightsurf.com, a student at Clemson University discovered twenty-two different genes that are associated with the formation of glioblastoma, a rare and aggressive type of brain…
According to a story from independent.ie, acclaimed author Emma Hannigan announced that her final options for treatment had been exhausted in her fight with BRCA-mutated breast cancer. Her doctors have…
Keeping a smile on 13-year-old Bryce Fisher's face is starting to get difficult. When all of his friends are going to school and involving themselves in fun activities, Bryce has…
Natalie Grant, a critically acclaimed Christian artist, gets a Grammy nomination when she needed it the most. The Tennessean shared her story of undergoing voice threatening thyroid surgery to remove…
The Mercury News originally reported that a new cannabis based drug found success with reducing epileptic episodes in patients with Lennox-Gastaut Syndrome. They hope to have the drug available on…
Read Part 1 of Amy's Acromegaly Story here. The doctors told me that they felt the surgery removing the tumor was successful, but because of the position and size of…
According to a story from CNNMoney, Scott Gottlieb, the current commissioner of the US Food and Drug Administration (FDA), said that he plans to curtail high drug prices and go…
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