You may know her from movies like Legally Blonde, Cruel Intentions, and Hellboy - but now Hollywood star Selma Blair has a new role she's tackling: multiple sclerosis advocate. Just…
October is Achondroplasia (Dwarfism) Awareness Month! Achondroplasia is a bone growth disorder that causes dwarfism. Dwarfism is defined as a condition of short stature as an adult. People with achondroplasia are…
October is Kabuki Syndrome Awareness Month! And it's important to connect with other people in the community; there's always strength in numbers. So let's learn a little more about Kabuki syndrome…
Some of you may have heard this story, others may be completely new to this, but bear with us on this funny and on-topic story that made the rounds on…
October is Trigeminal Neuralgia Awareness Month! One way you can honor this month is by signing TNnME: Intl Trigeminal Neuralgia and Me's petition for the World Health Organization (WHO) to add Trigeminal Neuralgia…
Rare diseases come in many forms, shapes, and sizes - with varying degrees of symptoms and attributes. Here is one that made news on the Internet, for it's peculiar and…
October is Dysautonomia Awareness Month! Before we get into advocacy, let's touch on basic awareness... What is dysautonomia? Dysautonomia is the umbrella term that encompasses several different conditions that cause a…
Over the weekend, the New York Times ran an opinion piece that caught our attention. "He Got Schizophrenia. He Got Cancer. And Then He Got Cured." Click here to read…
Show of hands - who has ever indulged in a little beauty pampering? A mani/pedi? A haircut? A shave? Sure, that was a trick question - who hasn’t?! And that’s…
October 1st is International Gaucher Day! What is Gaucher Disease? Gaucher disease is a lysosomal storage disorder in which the activity of the enzyme beta-glucocerebrosidase is incredibly low or non-existent.…
September is Achalasia Awareness Month! Achalasia may not be a disease you've heard about - so you've come to the right place! What is achalasia? Achalasia is a rare disorder that…
September is Krabbe Disease Awareness Month! Because a lot of times, these rare diseases are rarely talked about, it'll be useful to deep dive into the disease to learn more…
September is Ovarian Cancer Awareness Month! How much about it do you know? Let's take a deep-dive. Ovarian cancer is a type of cancer that forms in a woman’s ovary.…
For any football fans here, Matt Millen needs no introduction. For the rest of us who are unfamiliar, Matt is a four-time Super Bowl-winning linebacker who has played for the Oakland…
September is Primary Biliary Cholangitis Awareness Month! What is PBC? Primary biliary cholangitis (PBC) is a chronic disease of the liver characterized by a slow, progressive damage to the bile ducts…
September is Histio Awareness Month! That "histio" refers to histiocytic disorders, which are are a group of diseases that occur when there is an over-production of white blood cells known…
Facebook and social media has garnered a lot of attention the last handful of years – and largely for negative reasons. At this point, when you think of Facebook, the…
The rare disease advocacy community is mourning the loss of a wonderful voice, Claire Wineland, who passed away Monday after her battle with Cystic Fibrosis. Claire suffered a stroke on Aug…
September is Dystonia Awareness Month! Dystonia is a chronic movement disorder, existing in the same family as the more well-known Parkinson’s disease. Symptoms of dystonia are defined by involuntary muscle contractions which…
Friday September 7th is World Duchenne Muscular Dystrophy Day! Duchenne muscular dystrophy (DMD) is one of nine forms of muscular dystrophy. Patients with DMD cannot make dystrophin in their muscles causing…
For comedy and Saturday Night Live fans, Pete Davidson needs no introduction. For those out of the loop, you might now be hearing more of this young comedian who is…
August is Stevens-Johnson Syndrome (SJS) Awareness Month! In honor of the SJS community, Friday August 31st has been designated an awareness day. What is Stevens-Johnson Syndrome? SJS is a rare, serious…
Unknown origins of birth. Overcoming enormous personal obstacles at an early age. A mysterious medical diagnosis. Making a drastic new change in life. This could - and is! - a…
Senator John McCain passed away on Saturday, August 25th after his year-long battle with glioblastoma, a rare form of brain cancer. He was four days short of his 82nd birthday.…
Just this morning, the family of American hero and political icon John McCain announced via a statement he will cease treatment for the aggressive and rare form of brain cancer,…
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