We wrote back in 2015 about Beyond the Diagnosis, a traveling art exhibit featuring portraits of children with rare diseases curated by the Rare Disease United Foundation. Its latest stop was…
Last month, we reported about a sudden outbreak of acute flaccid myelitis (AFM) in 2018, a rare condition that has Polio-like symptoms, and affects mostly children. Sometimes, stories like this…
A UCLA-led research team has developed a spray gel embedded with immune-boosting drugs for post-surgery cancer patients to thwart reccurrence and spreading of the disease. After initial testing on animals,…
Olympian skater Scott Hamilton was the keynote speaker at the CURE media group's sixth annual myeloproliferative neoplasm (MPN) Heroes celebration, honoring nine individuals who have also dedicated themselves to improving the lives…
The holiday season is upon us, and nothing says holiday cheer more than the smooth and sultry sounds of Michael Bublé singing Christmas tunes. In fact, Michael Bublé has been promoting…
The Washington Post reports a gripping story of a family struck by a rare disease diagnosis, but also a heartening story of a global community coming together to support them…
President Herbert Walker Bush passed away on Friday, November 30th at the age of 94. News coverage of his life has reminded us all of the great legacy he leaves…
Behold the power of sheer will, determination, and tenacity! New York teen Hannea Milliman overcame the rare disorder Parsonage Turner Syndrome - which causes severe pain in the shoulder and arm -…
As part of the NFL's "My Cause, My Cleats" awareness project, New York Giants Running back Saquon Barkley chose 22q11.2 deletion syndrome (22q) as his cause to highlight! And while that…
Today is National Phenylketonuria (PKU) Awareness Day! The United States Senate only very recently voted to designate December 3rd as PKU Awareness Day, in 2012. So let's take a moment…
The first week of December is Crohn's & Colitis Awareness Week! Courtesy of the Crohn's & Colitis Foundation, there are a few things we can do as rare disease advocates to…
There's some good news for the hereditary angioedema patient community this week! Shire, a global biotechnology company focused on rare diseases, announced in the Journal of the American Medical Association (JAMA) publication…
Stand Up To Cancer (SU2C) has donated a million dollars for a research project dedicated towards a new way of deploying the immune system against pancreatic cancer. This is welcome…
Join us into the future for a moment as we take you through some exciting new developments in health tech! Just last week, the FDA cleared reSET, a mobile app that…
Stephen Hillenburg, the creator of Nickelodeon's iconic cartoon series “SpongeBob SquarePants,” died Monday of this week after battling amyotrophic lateral sclerosis (or ALS, also known as Lou Gehrig’s disease). What is ALS?…
Just this week, the Food and Drug Administration approved a drug that targets a wide range of cancers based on DNA, rather than where the tumor is in the body. This is being…
Ready for a dose of inspiration to get you through the Monday after a long weekend? We got you covered! Meet Alex Biagi from Colorado - who in 2008 was diagnosed…
You might have heard of the recent political situation where President Donald Trump criticized retired Adm. William H. McRaven on a number of issues. We're not going to dig into…
"Do you know what the world’s third most populated country is?" It's a question that Dr. Rafael Sousa Fernandes posed in an OpEd, wrote that made all of us here at Patient…
According to the US Centers for Disease Control and Prevention, there have been 10 more confirmed cases of acute flaccid myelitis (AFM), a polio-like illness that mostly affects children. This now…
November is Epilepsy Awareness Month! Epilepsy is a central nervous system disorder in which brain activity becomes abnormal, causing seizures or periods of unusual behavior, sensations, and sometimes loss of…
Forbes reports that Healx, a British biotech startup, is using the power of artificial intelligence to find new uses for existing drugs that treat rare diseases. "Healx combines AI technology, pharmacology…
November 1st is Acromegaly Awareness Day! What is Acromegaly? Acromegaly is a hormonal disorder characterized by significant, abnormal growth, caused by an excess amount of growth hormone, or GH. GH is produced…
November is Pancreatic Cancer Awareness Month. The American Cancer Society’s estimates for pancreatic cancer in the United States for 2018 are: About 55,440 people (29,200 men and 26,240 women) will…
The cultural evolution of marijuana hit a new high when Canada recently legalized its recreational use, which also helped opened the door further to the medical exploration of marijuana's effectiveness.…
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