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…
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…
We're no stranger to 'Stranger Things' breakout star Gaten Matarazzo, who captured our attention playing Dustin on the hit show -- but he also captured our hearts when he became…
'What you can't see can't hurt you.' It's a classic and well-intentioned phrase, but we know it to be quite untrue; especially if you ask any one of the millions…
January 24th is Moebius Syndrome Awareness Day! Let's take a deeper dive into what Moebius Syndrome is and what we can do to push awareness on this day (and all…
January 26th (the last Sunday of January) is World Leprosy Day! Mostly remembered as a Biblical disease that lead to shunning and societal ostracization, the stigma surrounding leprosy has made…
January is Cervical Health Awareness Month! The New Year holiday is all about taking stock of one's self and making efforts to improve or set goals for a better you.…
The human spirit can be a remarkable force. Robb Freed cycled thousands of miles by himself to raise awareness for epidermolysis bullosa (EB) -- a rare illness that took the…
Sometimes in moments of tragedy, there is a bright silver lining that helps us learn, and that's exactly what Amber Briggle was aiming to do. Back in October, Amber posted…
January has been designated as a time to bring awareness to alternating hemiplegia of childhood! Alternating hemiplegia of childhood is extremely rare, with about 1 in 1,000,000 reported cases; therefore…
The Calgary Herald published a story about 2 and 1/2 year old Armando Perez's rare disease Progressive Familial Intrahepatic Cholestasis (PFIC), with has left him unusually itchy. It's so important…
John Lewis, a longtime United States congressman and civil rights leader who helped organized the historic 1963 March on Washington, announced he's undergoing treatment for stage 4 pancreatic cancer. At…
The holiday season and end of the year/decade is upon us! As schedules slow down and we begin to reflect, I too began to take stock of the experiences that…
Big development for those in the primary hyperoxaluria type 1 (PH1) community! Alnylam Pharmaceuticals just announced that its Phase 3 study of lumasiran, an investigational therapy for the treatment of primary…
A big step forward for those with amyloidosis! The European Medicines Agency (EMA) granted Pfizer a positive recommendation for the approval of its treatment for amyloidosis, a rare disorder that…
Former Bachelorette star J.P. Rosenbaum announced on Instagram that he has been diagnosed with rare Guillain-Barré syndrome (GBS). Whether you're a fan of the Bachelor/Bachelorette franchise or this is the…
What started as an outing to a Virginia Tech event blossomed into the mutual love between a young girl with a rare disease and the Virginia Tech sports community (aka…
We've been hearing A LOT about so-called 'gene editing' and 'CRISPR' lately -- and now there's new developments on that front. Scientists have developed a new gene-editing technology called 'prime…
Rest In Peace, Senator Kay Hagan, who unexpectedly died Monday at the age of 66. It has been widely reported that Senator Hagan was diagnosed with encephalitis in 2016, which…
November 1st is Acromegaly Awareness Day! Let's do our part by getting a deep dive into acromegaly and the resources available for the acromegaly community! What is Acromegaly? Acromegaly is…
You may forgive the Sci-Fi esque headline, but sometimes the truth is stranger than fiction! The 28-year-old from France (identified in this CNN piece as Thibault) was almost completely paralyzed…
Meet Shane Burcaw and Hannah Aylward. Shane has spinal muscular atrophy (SMA). Hannah doesn't. And their message is: That doesn't get in the way of being together. So they've taken to…
For non-music fans, this may be the first time you're hearing of The Muffs or its frontwoman Kim Shattuck. The Muffs were a Southern California punk rock band formed in 1991…
Stem cell therapy via intravenous injection lessened symptoms and prolonged survival of Gaucher disease, reports a study using a mouse model. The study was published in Human Molecular Genetics, and reported…
October is Gaucher Disease Awareness Month! The National Gaucher Foundation (NGF) has some wonderful resources that can come in handy for the Gaucher patient community. Let's take a look below!…
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