Wisconsin; the land of beer, cheese, good-hearted people, and Maria Voermans - rare cancer survivor and now fierce advocate for the rare disease community. Ten years ago, Maria had the…
"...just like 50,000 other people in the United States each year, this week I was diagnosed with stage 4 pancreatic cancer." Alex Trebek - who has has hosted the…
Last year, Patient Worthy featured actress Selma Blair after she announced her multiple sclerosis diagnosis. While no one is immune to the stresses and challenges of a medical diagnosis (Hollywood…
Music and rock 'n' roll lovers already know him name, but Peter Frampton soon will become a new type of rock star: rare disease advocate. The British guitar legend announced…
The Super Bowl is obviously a big deal for football fans - but it's also (for a lack of a better term) the SUPER BOWL of commercials. Over 100 million…
We've all seen the commercials - especially during the holiday season - for home DNA kits like 23andMe and Ancestry DNA, where a saliva sample can unlock your family heritage.…
February 2nd is Neuroblastoma Awareness Day! It's important to know more about this rare cancer, since knowledge and familiarity are often the engines of progress. What is Neuroblastoma? Neuroblastoma is a…
What started as a peculiar and insatiable thirst for water led to a rare disease diagnosis for a Denver family. Although they weren't expecting this challenge, they're ready for the…
The Atlantic featured this incredible story about the possibilities of using genetically altered piglets as avatars for children with genetic diseases. Furthermore, the article delves into the personal story of one…
January is Cervical Health Awareness Month! So, why not use the momentum and goal-making spirit of New Year's Resolutions to make sure you get screened for cervical cancer and schedule…
While rare disease affects people all around us, often the mainstream press . Which is why it's extra important when a news outlet as big as the Los Angeles Times…
A GoFundMe page has been set up for two-year-old boy Kaiden, who was recently diagnosed with a rare vascular condition known as Moyamoya disease. His family is trying to raise…
On Christmas Eve, Josiah Viera passed away at the age of 14, after a public, inspiring journey with the extremely rare disease progeria, which causes accelerated aging in children. Josiah was…
Purdue University just reported that researchers have identified a biomarker (a measurable substance in an organism whose presence is indicative of disease or infection) that could be an early sign…
Japanese drugmaker Chugai now has two positive phase 3 studies backing the efficacy and safety of the antibody satralizumab to treat neuromyelitis optica spectrum disorder (NMOSD). Great news for the patient community of…
There is some promising news coming out of the American College of Asthma, Allergy and Immunology (ACAAI) annual meeting in Seattle, Washington. According to a case study, rare forms of inducible urticarias…
Big news out of the FDA last week! Alexion Pharmaceuticals got approval for ALXN1210 for paroxysmal nocturnal hemoglobinuria, or PNH, which will now be sold as Ultomiris, while Stemline got approval…
Meet Cameron Scott, eight-year-old superhero who has been declared free from his stage 4 brain cancer! Specifically, Cameron was diagnosed with medulloblastoma, a rare high-risk tumor which spread to his…
Patients, caregivers, and advocates alike all know how devastating and exhausting a rare disease can be, so it's important to find the moments to celebrate when someone overcomes the odds…
Cedar Rapids, Iowa is rallying to help a one-year-old girl who has been diagnosed with Caravan disease, a devastating disorder that often leads to premature death, within mid-childhood. What is Canavan…
This story comes to us courtesy of a local Rhode Island TV station's "Small But Strong" news feature, highlighting the strength and tenacity of children. 10-year-old Zoie Mercier and her…
It feels good to rally together for a good cause, doesn't it? That must be the case for this Cedar Valley, Iowa community who answered the call when the mother…
The Heritage Florida Jewish News reported a story about one sister's journey to her Gaucher Disease diagnosis, thanks to her older sister's wedding prep. What is Gaucher Disease? Gaucher disease…
Watch this and try NOT to get into the Christmas/holiday spirit! What makes this even better is that this annual Christmas lights display is put on to help raise money…
A University of Florida research team has announced its results of a gene replacement therapy in the treatment of Barth syndrome, which delivered promising results in its initial phase of testing.…
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