Hofstra is one college campus that gives students with disabilities the support and accommodations they need. They even have their own program called Student Access Services (SAS). The program is…
The HLN channel aired a documentary special regarding the rare and mysterious condition, fatal familial insomnia (FFI). FFI is a very rare genetic sleep disorder, with less than 40 families diagnosed…
Good news for patients with Mucopolysaccharidosis Type VII (MPS VII)! In mid-November, the FDA approved a new drug for treatment of this rare disorder. The drug can be used for…
A major first step for a viable treatment option! Achillion Pharmaceuticals last week reported preliminary proof-of-concept results from its ongoing Phase 2, study of a new treatment for C3 glomerulopathy…
Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease, affects approximately 30,000 people in the United States. The National Organization for Rare Diseases estimates that 5,000 more people are diagnosed…
Julian Randle always wanted to play basketball. Now, the 11-year-old suffering with a rare disease will be joining a college team in Kansas. It was almost like a dream. The…
Love them, hate them, or love to hate them - celebrities are a big part of our culture. They sell us clothes, perfumes, lifestyles - and some we even elect…
As the United States Senate gears up to vote on whether to pass their version of the Republican-crafted tax reform legislation (the House of Representatives has already passed their version),…
If you watch "Eastenders" on the BBC, then you're familiar with the jovial Barry Evans character played by Shaun Williamson. You might have also seen him on "Celebrity Big Brother,"…
Everybody responds to treatments differently. The drug, diet, or surgery that successfully helps one person, may have a neutral or even negative effect on another. This is why the medical…
This past July, professionals, patients, and families with loved ones who struggle with primary hyperoxaluria Type 1, 2 and 3 were offered a glimpse of hope and a better future.…
My son Nick has a rare, debilitating, life threatening disease called Lennox-Gastaut Syndrome (LGS). To learn more about LGS, click here. For over 38 years I have been consciously aware…
From paintings and statues to circus advertising and reality TV, the last few centuries of art has not always favored people with achondroplasia. Although some of the earliest pieces of…
16-year-old Holly LaPrade found her muscle and tendons slowly turning into bone because of a rare disease she had no control over, a news that sent a crushing blow to…
Trigeminal neuralgia (TN) is the type of disease you wouldn't wish on anyone. It's characterized by extreme pain in the trigeminal nerve, which innervates the face. It's often described as…
The fate of newborn screening for Pompe disease and MPS-1 throughout the state of VA will be determined next week. The VA Newborn Screening Advisory Committee meeting will take place…
Reported cases of achalasia are up in the United Arabic Emirates (UAE), a country along the Persian Gulf. This increase has caused concern among health officials, according to an online…
Progeria is an incredibly rare genetic condition, where a random mutation causes a person to age rapidly. Progeria patients are essentially young people in the body of someone much older.…
The Green family is trying to raise money for their daughter's life-saving surgery and it's now becoming a race against the clock. 18-year-old Ylena Green is suffering from Ehlers-Danlos Syndrome,…
You're familiar with the formula of the rom-com: Boy meets girl, girl falls in love boy, boy faces obstacle, girl almost loses boy - but eventually big kiss and happily…
For those people struggling with GNE myopathy, there is someone who wants to hear from you. Whether you’re a patient or a loved one of someone with this rare disease,…
Advocates for people with rare diseases such as hypophosphatasia (HPP) are changing the world. Moms and dads, aunts and uncles, brothers, sisters, cousins, spouses and friends play a tremendous role…
Whenever I'm under a lot of pressure, I daydream about a day off, where I could watch true crime shows, eat pizza in bed, and never get out of my…
Crohn’s disease may affect as many as 1.6 million Americans, according to the Crohn's & Colitis Foundation (CCF). Although it can strike at any age, Crohn's is more prevalent among…
When you have a rare disease like Friedreich ataxia (FA), which affects only 50,000 people in the United States, it is pretty easy to feel alone and isolated. Usually, the…
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