October is Castleman Disease Awareness Month!
Awareness is power! So let's do work together and amplify the Castleman community! What is Castleman Disease? Castleman disease (also known as giant lymph node hyperplasia or Castleman tumor) is…
Sign Petition in Support of Trigeminal Neuralgia Research
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…
Meet 2-Year-Old Mehlani: Her Rare Condition Gives Her Big ‘Disney’ Eyes
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…
How to Make October Work for Dysautonomia Awareness
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…
NYT: Man’s Bone Marrow Transplant Cures His Schizophrenia. What Does it Mean?
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…
All Aboard the Beauty Bus! An Org Providing Beauty Services for Patients
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…
Join the EGA in Raising Awareness for International Gaucher Day!
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!
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…
What is Krabbe Disease? A Primer During Awareness Month!
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!
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.…
Watch: Big Ten Network Profile of NFL Legend Matt Millen’s Fight with Amyloidosis
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 (PBC) Awareness Month!
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…
Nine Things you Can do this S.E.P.T.E.M.B.E.R. for Histio Awareness Month
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…
Meet Tony: Parkinson’s Advocate by Way of Facebook
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…
Remembering Claire Wineland, Cystic Fibrosis Advocate
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…
Go to a Zoo for Dystonia Awareness Month!
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…
Do Your Part to Raise Awareness for World Duchenne Muscular Dystrophy Day!
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…
Meet Comedian Pete Davidson, Unlikely Advocate for Crohn’s Disease
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…
Take a Walk for Stevens-Johnson Syndrome Awareness!
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…
A Story You Can’t Make Up: How Behçet’s Disease Inspired Gary to Become a Thriller Novelist
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…
Thank you, John McCain
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.…
Sen. John McCain Will Stop Receiving Treatment for Glioblastoma
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,…
Alagille Syndrome Org Launches Multi-Colored Ribbon Awareness Project
The Alagille Syndrome Alliance has launched its first ever awareness ribbon in support of the Alagille syndrome (ALGS) community! The multi-colored awareness ribbon is meant to represent the complex and uniquely…
Celebrate Children’s Health Day with Incredible and Free Resources from Sesame Street
Elmo and friends are here to help! - thanks to the good people of The National Association of Community Health Centers (NACHC)! For those who have never heard of the NACHC,…
Register Now to Attend the Symposium on GNE Myopathy for Free!
Calling all members of the GNE Myopathy community! The Neuromuscular Disease Foundation (NDF) is hosting its 5th Annual Symposium on GNE Myopathy this August 30-31st at the University of California, Los Angeles. For…
