Lily Ayres, at the ripe age of 2, has been fighting a rare disease ever since she was born. Little Lily suffers from Moebius syndrome and because of it, she…
The Pediatric Stroke Warriors were formed in 2015 and have thus grown into the biggest childhood stroke nonprofit out of the Pacific Northwest Region. Their mission is to strengthen communities…
After the long hard fight against Sturge-Weber syndrome, 23-year-old Craig Morrison could fight no longer. He passed last Monday following complications with his rare disease. Sturge-Weber syndrome springs at birth…
Prescription drugs have always been overly expensive but there's now hope for these prices to drop down. On Tuesday morning, the Senate Health Committee held a hearing to discuss the…
A young girl from Australia had her period when she was 4-years-old. According to Independent, young Emily Dover is well on her way to experiencing menopause at the young age…
Exploding paper-mache volcanoes. Solar systems made of styrofoam balls. Carrot electricity. I remember the sights, smells, and sounds of my high school science fair as it was yesterday. Those earth-shattering…
Last year in London, a flash mob took the streets and pounded out a choreographed routine to the song "I Am What I Am". They weren't just having a blast…
It seems like copper is all the rage right now. A quick stop by any pharmacy shows copper-infused knee, ankle, wrist, and even back braces. Even the ironman of the…
Date of issue: October 19, 2017 Boxing legend Michael Carruth was today firmly in Cystic Fibrosis Ireland's corner at Dublin's Irish Film Institute for the launch of a new awareness…
Sherry Jo Ward sits in an orange armchair, playing harmonica in the center of the stage. She leans forward on the matching ottoman for emphasis. Her walker is never out…
Meet the Eaton family. Every since their son Vincent was born with Multiple Hereditary Extoses (MHE), they've united as a family to find ways to combat the rare disease. And…
As the world turns, so do advancements in gene therapy. Technology is changing our world so drastically that soon gene therapy will be simplified into a one-shot treatment. With it,…
National Drug and Alcohol Facts Week is the last week of January. American Heart Month is February. And October is the sentinel month for people with achondroplasia aka dwarfism. October…
Rebecca Wanosik was already a pro when it came to being a mom. Zedyn was her fifth child. She knew to trust her gut when, three weeks after her baby…
James Moran suffers with Stickler syndrome and with it, is writing a new play to get in touch with his humanity The Assassination of Pope Urban II is a piece…
Bruises. Ouchies. Boo Boos. Whatever you call them, injuries to the skin can happen anywhere on the body and can be caused by everything from vitamin deficiencies to a rare…
It's Guacher Disease Awareness Month! According to eurogaucher.org, International Gaucher Day was a success! This year it was observed on October 1st to bring awareness to Gaucher disease. The European Gaucher…
According to a late-summer press release sent out by the companies, two pharma players are joining forces and making waves in gene therapy for hemophilia A. Sangamo and Pfizer announce…
David Church is a 21-year-old Professional Billiards player and he has the will power of a Saint. He suffers from Moebius syndrome, an extremely rare neurological disorder that causes severe…
At first glance, little Victoria Thompson looks like your average happy and healthy toddler. You'd have no idea that once upon a time, she had a tumor on her kidney…
Every year, hundreds of people in America are infected with babesiosis, a tick-borne infection that causes malaria-like symptoms. For some reason, older white men have the highest rates of infection.…
Rare disease research can feel like an uphill battle. First of all, rare diseases have a harder time receiving funding. After that, it takes months or even years to have…
Let's talk medical foods, shall we? For those of you who haven't heard of them, a medical food is a food that is created in order to be eaten or…
The memories we have of growing up should be the type that we look back on and smile about. That is not to say that they all should be happy…
The first ever rare disease film festival took place the first week of October in Massachusetts! Founded by rare disease parents Bo Bigelow (USP7 mutation) and Daniel DeFabio (Menkes Disease),…
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