Rare Disease in the News

Inquirer.net

Senate bill makes headway to help Filipinos with rare diseases
Inquirer.net
A few days after that ALS (or amyotrophic lateral sclerosis) Ice Bucket Challenge (this is a social media phenomenon that raised worldwide awareness as well as funds to fight ALS, a rare and progressive disease that affects the nerve cells in the brain ...


Good4Utah

Centerville teen a rehab success after paralysis from rare disease
Good4Utah
A Centerville, Utah family sends its son on an LDS mission to England. He returns home about a month later in a wheelchair. In our continued partnership with Intermountain Medical Center, we show you the progress the 18-year-old is now making. Thanks ...


Boston Herald

Nanny's lawyers want rare disease inquiries
Boston Herald
The case of the Irish nanny charged with murdering a 1-year-old Cambridge tot took a bizarre twist in Middlesex Superior Court yesterday as prosecutors said a medical expert had ruled out a rare disease — and defense attorneys said they want to know ...


What Is a Rare Disease, Exactly?
Medscape
The US Food and Drug Administration (FDA) defines a rare disease as occurring in less than 200,000 people in the United States. That means that as few as five people, or as many as 200,000, could have a rare disease. Obviously, such conditions as ...


Surviving the Rare Disease Roller Coaster
U.S. News & World Report
And indeed, that's a common misdiagnosis for the devastating disease Eliza actually had: Sanfilippo syndrome, a rare genetic metabolic disorder that gets progressively worse in children after age 5 and typically causes their death when they're in their ...
Family raises $1.8M for SC girl with rare disease - CBS 3 Springfield - WSHMWSHM-TV

all 9 news articles »

The River Cities Sunday Tribune

Marble Falls boy shares rare disease, strong will with Dallas Cowboy
The River Cities Sunday Tribune
Six-year-old Joel Thompson (center) of Marble Falls got to meet Dallas Cowboys defensive tackle Amobi Okoye (back row, left) on Nov. 15. The boy suffers from the same rare disease, anti-NMDA receptor antibody encephalitis, as the pro player. Also ...


Daily Echo

Rare disease breaks out at Hampshire schools
Daily Echo
MORE than 100 people have been vaccinated after an outbreak of a rare disease at Hampshire schools. Public Health England is investigating a surge of Hepatitis A cases after seven people were diagnosed with the illness in Portsmouth. It is understood ...

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Targeting Drugs for Rare Diseases
Medscape
Marshall L. Summar, MD: I'm Marshall Summar, chief of genetics and metabolism at Children's National Medical Center in Washington, DC. I am here for Medscape Rare Diseases at the National Organization of Rare Diseases Orphan Products Breakthrough ...


NBC New York

Rare Disease Leaves New Jersey Teen Unable to Eat
NBC New York
That's because the 19-year-old from Hunderton, New Jersey, has a rare and incurable medical condition called Chronic Intestinal Psuedo Obstruction that tricks her body into thinking any food making its way through her digestive tract is an intestinal ...
New Jersey teen's rare disorder means she hasn't eaten in two yearsNew York Daily News

all 3 news articles »

Brampton Guardian

Man with rare disease petitions MPP for access to drug
Brampton Guardian
BRAMPTON – A Brampton man suffering from an ultra-rare disease is petitioning the province for access to a drug that could save his life. Michael Eygenraam, the local father of two, suffers from an extremely rare genetic condition called atypical ...

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